Jenn’s Endo Story

I always knew I couldn’t get pregnant. A doctor didn’t tell me, but I knew. I didn’t know what was happening with my body, but I knew it was telling me that something was wrong. I mean, when a woman knows, she knows.

I married Tommy in December of 2011, but before that I had only two serious boyfriends and during those years, I experienced not even a single pregnancy scare. Even when my period was “late” occasionally, I knew it was because of stress, or being around too many women, which offset my cycle for that month, I mean whatever could explain it, explained it; everything else but pregnancy. I don’t even remember if I told my husband whether or not I thought I’d be able to have kids, but I’m sure he eventually wondered why there were no scares.

During the summer of 2012, things shifted for us. It was July precisely when I ended up getting a pretty bad bladder infection. I was working so much and not really taking care of myself, not drinking much water and such. As my OB/GYN is prescribing an antibiotic for me, I just sort of casually mentioned how painful sex had become. I went on to explain that I had been charting my period for about a year as well as each time I had sex, and how all of a sudden we’d been averaging about 2-4 times a month because I’d be so sore, tender, and swollen no matter the position. My OB/GYN stopped dead in his tracks.

After my week of antibiotics, I returned for an exam to see where in my insides I felt pain, and the next thing I know, my husband and I are sitting with the surgery coordinator scheduling a laser laparoscopy for suspected endometriosis.

I never had a surgery before, so I was freaking OUT. I didn’t even know what endometriosis was. There were so many medical terms flying at me, left and right, and I was expected to keep up. So I did what any other untrained, adult dummy would do, I googled it. I went into the surgery convinced I was going to die from anesthesia, or I would wake up and all my girlie parts would be gone because I had cancer or some rare medical anomaly only documented in two American cases in history.

Morning of surgery.

Morning of surgery.

The day after surgery, August 18th, my mom and husband explained to me how things went. My GYN/Surgeon found endometriosis. Lots of it. I think they said it was a little more than he expected. I also was diagnosed with Poly Cystic Ovarian Syndrome. My right ovary was full of cysts; it wasn’t releasing the eggs each month and instead they were hardening inside of my ovary and turning into cysts. He drained them all, and punctured my ovary to help encourage egg production, or something like that. The good news? My left ovary was fine and my fallopian tubes were nice and clear. He injected a purple dye into my tubes to make sure they were functioning properly. I was bleeding purple for a few days.

August 17, 2012. Green for Fertility. Aqua for Protection. Light Blue for Healing. White for a successful surgery.

August 17, 2012. Green for Fertility. Aqua for Protection. Light Blue for Healing. White for a successful surgery.

Husband and my mom. It's not that I was a diva...

Husband Mom. It’s not that I was a diva…

The conversation he had with my mom and husband alarmed me. He told my husband that if I wanted to have kids, that I’d better “get busy,” that endometriosis wasn’t going to go away, that this surgery was a treatment, not a cure. He says in some women, the endometriosis comes back pretty fast and that if I wasn’t pregnant within 3-6 months that I should start Clomid.

Then, if that wasn’t enough. I took a Pap during my pre-op and it came back abnormal. There was a low-grade lesion on my cervix, which indicated I was in the very early, pre-cancer stage of cervical cancer, but I didn’t have to worry says my OB/GYN. I could follow up with a certified GYN in New York and they could do the procedure there…

So there it was. I was supposed to be actively trying to get pregnant because the endometriosis was “gone” for the moment, while a completely separate but equal situation was brewing in my lower parts.

But…

My flight to New York was already confirmed. I would be starting grad school in a matter of days! I had my stitches taken out early so I could get on a plane. I arrived in NY on a Sunday, and right onto campus that Monday. I lived in the Bronx at the time and each time I needed to be on campus, it took me almost two hours to get there. I fought that pain like you wouldn’t believe. I went to meet-and-greet socials, I went on a campus tour, I bought books, I walked the city, all the while, in excruciating pain. My husband stayed in Georgia at the time because he’d be graduating in December. So, I cried myself to sleep each night from the pain and from the confusion. I called to find an OB/GYN for this lesion thing and was told that doctors don’t take new patients until the end of the year.

It all happened so fast. I just went in for a bladder infection and the next thing I know, I’m laying on a surgical table, then being told I get 3-6 months to try it out on my own before I should invest in some fertility drug, THEN being told I had a pre-cancerous lesion in my cervix. I just turned 24 in 2012, I was admitted to my dream school and now I had to give it all up for babies? Oh, and God was I terrified of cervical cancer. I saw what it did to my mom. It took her uterus and ovaries, and a child if I’m not mistaken. The fact that I was even in pre-, early, not cancer but close, stages of cervical cancer completely shattered my psyche.

I took a medical leave of absence after two weeks of classes. I couldn’t handle the pain and the pressure of it all. My grandmother put me on a flight back home to be with my husband so we could have these conversations face to face. And make a decision.

I had a follow-up biopsy, which involved five samples of my cervix. My OB/GYN/Surgeon was shocked to see the rapid changes of my cells. He confirmed that they were indeed pre-cancerous, and that it wasn’t a matter of if they’d change into cancer, it was when. December 5th, just a week before Tommy graduated, I had a laser vaporization of my cervix and which removed all the abnormal cells. He says, “I’m 93% sure, they’ll never come back.” Finally, a win for the Camacho-Simmons’.

Contraptions you can't explain, equal nothing but pain.

Contraptions you can’t explain, equal nothing but pain.

December 5, 2012. Surgery #2.

December 5, 2012. Surgery #2.

Almost one year later, we’re still not sure what we’re going to do. I am not as emotionally fragile as I was initially, but I am no less confused. Do I go back to school in the fall? My medical leave is almost up. Do I start Clomid? It’s been 8 months since surgery and we’re not pregnant yet.

I don’t know.

This is what I do know: I have had little to no medical direction concerning the proper care of my endo-body. I have been left with nothing to do, but research. I have learned a lot about my diet being a contributing factor to the pain I experience each month, and the growth rate of my endometriosis. I have been documenting changes and lack of changes in my body. I am currently investigating the condition of my thyroid.

I am not sure whether I am supposed to move forward with school and building a life in New York City, or living a little slower in Georgia and starting the fertility treatment process. I just know I don’t have the heart to do both at the same time. I can’t balance a required internship, papers, city living and traveling with hormonal changes, documenting symptoms, pills and injections, timed intercourse, and ultrasounds. I can’t do them both at the same time because they both require my full attention, and if one should work out versus the other, I would be CRUSHED. Eventually, I have to choose… but how?

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8 thoughts on “Jenn’s Endo Story

  1. Jenn! Wow. Like you, I just always knew I’d have trouble having a baby. I didn’t get a full understanding of my problems until about 27. However, you are still young and you do not have to give up NYU. I know you will work out a plan. I can tell you are vivacious and this won’t keep you down

    • Thanks for that! I just wish the universe would give me a break already! Perhaps I should learn to let go and let God, but i’m sort of a control freak. Thanks for the support!

  2. i just want to give you a huge hug. you have been through so very much. i had to have a cone biopsy on my cervix three years ago, just as we were preparing to ttc. the first thing my gyn said was, “it’s not a big deal, but you’ll need a hysterectomy asap.” i remember the shock and the fear and the feeling of helplessness. i imagine you’ve felt all of that and then some. but i also see so much optimism and positivity in your posts. you’re a strong, brave woman, and i know you’ll find your way through all of this uncertainty.

  3. I too have been diagnosed with Poly Cystic Ovarian Syndrome I was 13. The only advice i can give you is that you are never to old to go to grad. school. So your dream to go to N.Y.U will still be achievable. With what ever choice you come to it is the right choice. never second guess that.
    Sending good luck your way!

    • Thats so true, and thank you for that. I’ve always had a plan for everything! My whole life was planned, to the TEE! I left no room for deviation, and this sort of just sideswiped me! Serves me right, I suppose! I’m learning how to readjust to change, and sort through the unexpected! It’s taking me some time so thanks for the luck!

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