endometriosis and infertility

Happy new week friends! As my husband and I approach our 5th wedding anniversary this Friday, I find myself reflecting on our marriage so far and what we’ve weathered together. One thing that has been weighing on my mind to discuss, is our struggle with infertility. I am generally a somewhat private person ( I find it easier to share others’ stories than speak up myself) so please bear with me if I start to ramble. Adulting is already so fu**k**g hard so it saddens me to hear and see so many people suffering in silence. So, this is my attempt at sharing my own “real” with you. It’s a really long story, so I have broken it down into parts, Here’s Part 1, I’ll be back with more on Wednesday!

  • The Beginning

As 26 year old newlyweds, we knew we would wait at least a year before we started trying. So, in our minds, we were preparing to become parents ideally the year after our wedding. That was the plan, until a dark unknown became our reality. That unknown was a 13 letter word called Endometriosis.

endometriosis diagram via mayo clinic

Okay, let me back up a little with what Endometriosis is. (En-doe-me-tree-O-sis) is a disorder in which tissue that normally lines the inside of your uterus (the endometrium), grows outside your uterus. Endometriosis most commonly involves your ovaries but can grow anywhere. What this means is that since there’s uterus lining tissue in random places,  you bleed and hurt from these places when your period comes. YIKES!

Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other.” – MAYO Clinic

  • Diagnosis

I was diagnosed with Severe Endometriosis in October of 2014 after an emergency check up with a new OBGYN in Stamford, CT. I had booked this appt because I was having random, sharp tugging pains in my lower abdomen that lasted several minutes each time and made it impossible for me to sit up. I’m no stranger to pain as I have had intense period pains since I was in college. I’m talking time-off, pass out type pain. Anyway, I wasn’t on my period and these sharp unbearable pains were happening frequently and wouldn’t go away unless I laid in one position for the rest of the day.  My regular ob/gyn was on vacation, so i found a new name and hurriedly scheduled an appointment.

Dr. Heading (a man I will forever appreciate) did an ultrasound within minutes, looked directly at me, and in the most candid and direct way said “You have endometriosis…. and it’s bad” My heart sunk because I’ve kind of always had that term loosely in the back of mind but hearing it come out was shocking and confusing. I didn’t know much about the disease and how my life would change forever. One thing I DID know about endometriosis was that it couldn’t be officially diagnosed without surgery so I had immediate questions about his diagnosis. Dr. Heading was kind, direct, and very detailed. He explained to me that the endometriosis had caused blood to back up from various places outside my uterus which in turn formed an 8cm chocolate cyst called an endometrioma– this was what he could see from the ultra sound and that was what was causing my sharp pain. He recommended immediate surgery to remove the cyst before it burst on its own. While in there he would attempt to remove as much of whatever endometriosis he found when he opened me up. SIGH!

endometriosis surgery

  • Surgery

In December 2014, I had the surgery. After I came to, my doctor let me have it. The diagnosis was Stage 4 Endometriosis ( they run from Stage 1 to 4) with a manifestation in just about all my lower organs…. from my ovaries to my bowels and my poor appendix (he actually couldn’t find my appendix because it was lost in the endo-sauce). My right ovary got the brunt of it and had the endometrioma (large chocolate cyst) growing on it but he was able to clear out as much of it as possible without permanently damaging them. Now, it was time to heal and see how things worked post-surgery.

endometriosis surgery recovery

  • Trying to Conceive

I think even after the surgery I had no idea the severity of my condition and what it would bring for my future. Before the diagnosis, we had been trying to conceive for a year, and it only then sunk in that it was a futile effort. Nothing really made sense but I felt hopeful that with surgery, things would go back to “normal”. After a few months of healing, we were permitted to start trying on our own again and instructed to come back if nothing happened. Well… Nothing happened.

A year went by and we were referred to an infertility specialist. The longest year of our lives.  The doctor reviewed my case and made his official recommendation: I should seek assisted reproductive help. The endometriosis was severe, continuous and a general barrier moving forward. Although the surgery had taken care of a lot of the existing tissue, my condition still remained and it would really need to be controlled for any fertility to occur.  Since we were moving to a new state within the month, we put everything on a back burner and continued to try on our own with the hope that something would happen. Well….Nothing happened.

We packed up and moved to Pennsylvania with fresh hope and a new Doctor. We found a Reproductive Endocrinologist (RE) near our new home and braced ourselves for the new normal. Lord, we weren’t ready. Let me repeat that: WE WERE NOT READY! I’ll save that for the next post because there’s A LOT to say. Thanks for reading guys. You can read Part 2 here.

  1. Tai

    Hmm Kunbi, first I must commend your strength for coming out to share something so private yet so common with a lot of people who have no strength to talk about stuff like this. Sending you major hugs and light xoxo

  2. Sheila

    http://www.sheilaojei.com

    WOW Kunbi, this must have taken a lot. Thank you for being able to share your story, I pray God gives you the strength as you continue being an inspiration to many around the world.

  3. Bugo

    You’re very brave to speak about your struggle with Endo! I honestly didn’t know anything about it until Millen Magese & Mel (from Mel’s wardrobe) told their own stories. Sending you lots & lots of love; I can’t wait to read part 2 xx

  4. Nneka

    I remember when this journey started like it was yesterday. Me, with my ‘phd’ in (in)fertility (lol!) and you, a wide eyed freshman. When we were throwing around the word ‘endo’ so loosely, not even knowing!!!! Thanks so much for sharing. It’s amazing how much we women are in the dark about endo, yet it is at the core of what defines us. Love you!!

  5. Nneka

    It was when I saw the pic of Lams and Mama Yinks that I burst into tears.

  6. Dami

    Dear Kunbi! I cannot begin to imagine what you and your husband went/are going through. So all I can do is to pray.. pray for you and your family because the waymaker we serve has made a way just by you being open to the world. God bless you!

  7. Omotola

    Psalm 31:7!!! Thank you so much for sharing. God is still in the business of miracles and I can say that All is Well.

  8. Abimbola

    Wow. Thanks for sharing your story, despite how uncomfortable it might have been. May God continue to strengthen you and your family, and heal you totally. May you find pure Joy at the end of it all. You are one blessed child.

  9. Dr Ada

    Kunbi the warrior princesss! Thanks for being so brave and sharing your story with the world! Some one out there who may not know the signs of endo or that endo is the cause of their infertility may now have the courage to seek help. It’s amazing the journey God permits us to live so we can be see a true manifestation of his love to us and others! #prayergames

  10. Yewande

    Wow thank you for sharing Kunbi. God is your strength!

  11. Oz

    I admire your strength and courage for this post. It’s already inspiring so far. God bless and favour you and your husband.

  12. Folaranmi

    So inspiring your story did bring hope to a friend suffering same thing,God bless you

  13. Bidemi

    Hi Kunbi, thank you so much for sharing such a personal story. I too have had to endure the pains of endometriosis and infertility and oh Lord – it isnt child’s play. The pain of endometriosis cannot be compared to anything else i have witnessed so far and it can be crippling. I also had a surgery in December 2014 to remove some endometriosis in Nigeria, my diagnosis was moderate to severe. Another full year after of no luck conceiving naturally – we had success with fertility treatments and are expecting to be parents in a few weeks.

    Looking forward to reading the rest of your story. Thanks again for sharing!

  14. yinka

    Awww….I’m sure you have gone through alot. I was diagnosed this month with stage IV endo also and just had my lap. I dont even know what to expect next, just holding on to God. Looking forward to the next post.

  15. Adaku

    Kunbi, you incredibly brave woman. I can’t imagine what you have been going through this whole time, and the courage it took to share this with the world. Thank you so much for your openness and for being so candid. I actually know very very little about endo, besides the fact it causes infertility and I’m gaining so much knowledge from your post already. Thank you so much for sharing, sending you major love amd light xx

  16. Kunbi

    GOD, the destiny changer, miracle worker will now be Doctor JESUS now that you have shared what the earth doctors have to say. I will keep you and hubby in my prayers. I know I can’t handle 1/3 of what you have just done! LOVE you cuz

  17. Moyo

    The Lord which deals with the impossible will show up for you and hubby in Jesus name.

  18. Moyo

    The Lord, who deals with the impossible will show up for you and hubby in Jesus name.

  19. mowale

    Thank you for sharing this Kunbi. I admire your strength, may God continue to comfort and encourage you. Our God is in the business of making what seems/is impossible, possible and He will make yours possible by His grace. For with God, nothing is impossible.

  20. Salewa

    http:/www.forstylesake.net

    Can’t imagine the amount of courage it took to share, lets not even talk about what you have been going through. Well done for sharing, I hope your story inspires, encourages and heals someone and I am trusting God to see you through it all and make it all beautiful in the end.

  21. Tundun

    I can’t express enough how brace I think you are for sharing your story.! TTC is one of the hardest things ever and endometriosis is a big bad elephant that people hardly talk about. But God is faithful and powerful and can make miracles happen! And it will happen for you and I. Thank you for speaking for us and breaking the silence. I don’t know you personally but i love you already.

  22. Romz

    Kunbz, I’m so shattered… so broken. I’m so sad to hear the severity of this. Still I know it is possible! Some things cannot be explained by logic and that will be your case In Jesus Name! You have been so brave to post this. This is something everyone needs to be aware of. You are fearless and I admire this so much! Continue to stay strong and have faith. Continue to be happy. You are surrounded with love and God will bless you with more. ❤️

  23. Uche

    Thanks so much for sharing your story. It takes a lot of strength to share this with complete strangers. I know to well how hard it is living with endometriosis. I was diagnosed with stage IV endometriosis in November 2016 (my first lap surgery) after living with chronic daily pain for almost 6 months (I was in and out of the hospital, drugs like Percocet and Morphine didn’t do anything for my pain). I was so hopeful after my surgery for a pain free life but that hope was cut short when the pain returned worse 3 months after surgery. Currently on Lupron which has helped a bit with the pain and have scheduled my 2nd lap in September with the Center for endometriosis in ATL to try and get my life back. I will definitely keep you in my prayers. #endostrong #endowarrior

  24. Tolu

    I can relate to your story and I definitely know this is a lot to share. I live in Nigeria and was diagnosed with endometriosis and adenomyosis (the inner lining is affected). To make it worse they didn’t even know the stage of mine and the doctor said assisted reproduction may not even work. In her words ‘you’d just have to keep trying’?? How? With how much money? For how long? To say my heart was shattered is an understatement. I’d wait for part 2.

  25. Danna

    Thank you so much for sharing your story. I have only recently become aware of endometriosis due to brave women such as you speaking on it. Women will be inspired and moved to continue to check themselves and start early if possible to seek medical treatment. You will most certainly see the awesome handwork of God in your life and that of your family. I pray that we women continue to uplift, support and pray for one another as you never know what the next person might be dealing with. God bless you Kunbi. x

  26. Danna

    To all the ladies in the comment section who have shared their stories too I pray for supernatural healing in your lives. God is the ultimate decider of our fate and his plans are to prosper us and make us fruitful. So shall it be in Jesus Name. Amen.

  27. O.O

    I love you for sharing your story and I applaud you for your bravery. I join my faith with all your readers, and everyone that has commented and will comment in the future. We stand together in agreement with you and declare that endo or no endo, you shall testify very soon in Jesus Name! So congrats dear on your bundle(s) of joy. The Lord has done it already, so enter into His rest.

  28. Lolade

    So brave of you to share your story. Thank you. I always appreciate it when bloggers keep it real like this because ppl tend to forget that there are real people behind the scenes. God is your strength. We all have are struggle and with God nothing is impossible. It’s all part of the story. All things work out for the good. Hold the faith. I wish you healing, Kunbi!

  29. Ijeoma

    God is still in the business of performing miracles and He is your ever present help. For nothing is impossible with our God. Kunbi receive your healing in Jesus name. Amen!

  30. Kemi

    You are so brave. Thanks for sharing. Just got diagnosed a few months ago. It seems to be mild, so we ‘keep trying’ for now. I believe God would answer our prayers very soon.

  31. Dunsin

    Hi Kunbi, really brave of you to share your story and the courage to go through all of this. Having had to wait to have a child, I understand a teeny wenny bit of this journey. I pray for strength for you and your husband also as you travel this path and for God’s grace as you look to becoming parents in whatever way he has decided. Sending you love and light

  32. Temi

    http:www.agreenpath.com

    Sending you massive hugs and lots of love!

  33. T

    Thanks for sharing Kunbi. You are indeed a very brave woman. I cannot wait for the ending, because I know it will end in Praise. May God bless You greatly..

  34. Bukky

    Thank you for sharing. This is incredibly enlightening

  35. Bisola

    http://www.gidiandpearls.com

    This is so brave of you thanks for sharing. I didn’t even realize it was a common diagnosis. I have a cousin who had it and her surgery successfully removed it. However, that was the first time I heard of it. I’m glad you got the courage to discuss this. Now more women can feel encouraged to speak about their experiences to find support. Thanks for enlightening me.

  36. Blessing

    http://www.blessingomakwu.com

    Kunbi, I haven’t been on social media in forever and so haven’t been able to keep up with you and APL. A friend sent this to me because she was so inspired by it. While I haven’t experienced infertility/endometriosis, I’ve seen so many of my close friends and family suffer through it…often in silence. Your openness and honesty about something you are still going through is exemplary. It’s easy to talk about things when the testimony is evident; so much harder when we are still going through. Much respect, love and light.

  37. TK

    Kunbi…….. God bless you girl….. The words you have shared are so touching and a true reflection of the reality of many women…. The Good Lord will surprise you with Heavenly Gifts!

  38. Nadine H

    Thank you for sharing your story. I too have stage 4 endometriosis and so far havr had 3 surgeries. I have been trying to conceive for 5 years now and just completed my 1st round of ivf which ended in a miscarriage. It is such a hard and emotional journey. I never knew what depression felt like until I was faced this battle. I will continue to pray for you and all women as we fight this tough battle.

  39. Tope

    I saw this post on beibeihavens IG page about but couldn’t read it because I was swamped with work. This morning 5.48am I woke up tried to sleep back but something kept tugging at me to look for and read your story. I know how hard infertility is, hell been at it for 6 year’s + now. I have my story but it’s not complete without my miracles. The God that have you the courage to write you story will complete it in the most amazing way. We can only be strong for each other as we continue to rest in the Lord to do that which he has promised he will do. Congratulations in advance mummy, your miracles will come. I pray for the husband’s that stand by us, I bless the day we met them. Sending hugs and hope your way dear.

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