Lady E

Endometriosis.

(Clearly this will be a tmi post. Red X now, if you’d like. I was hesitant about sharing this, but I’m feeling so alone in this, that I’ve decided I have to, if only to find one other person going through something similar or who can offer sound advice.)

It has been a part of my life since that chilly morning 7 years ago when I groggily awoke after surgery at 6am. My surgeon came into my hospital room after my appendectomy/cystectomy to tell me “Everything went fine. We removed your appendix and several grape sized cysts, looks like you’ll make a perfect recovery. Oh, and while I was in there, I did notice some fairly advanced endometriosis, especially for someone your age. You can discuss that with your doctor at your post-op visit.” and with that, he was gone. Leaving me with a million thoughts racing through my head.

Endometriosis. I’ve heard of that, we briefly covered it in anatomy & physiology. Something to do with feminine reproductive health, maybe causes infertility? All I’ve ever wanted in my life is to be a mom. What if I can’t be a mom? How bad is it? Can they do anything for it? Is it progressive? Is there a cure?

Travis had gone back to our dormitory to shower and dress for the day, so I was in my room alone. I called my grandma, one of the only people I knew would be awake at such an hour. She affirmed that yes, it could affect fertility and she was pretty sure my mom and other women in our family had it. They had all had children though, that was good news. Trav returned as I got off the phone with her, and I broke down and bawled to him. I had to have babies. I had to be a mom. He hugged me and assured me that even if I wasn’t able to get pregnant, he would marry me anyway. He was a 19 year old boy and had been dating me for 2 months, that was big. I’m pretty sure in that moment I knew I’d be his wife someday.

Since then, I’ve faced multiple laparoscopy abdominal surgeries to “clean it out” since it’s progressive and spreads every time you have a period.

Every month, and sometimes in between (thank you, adhesions), I’ve faced gut wrenching pain, with a bit of relief only by taking constant birth control that doesn’t allow my body to have a period (since endo only spreads when your body has a period).

And since then, we have been blessed with two amazing children, without the help of fertility treatments. My doctors have been shocked each time, as they both assured me that I would probably at least need medications to boost fertility, if not IVF or IUI.

The only “cure” for endo CAN be pregnancy. A pregnancy can essentially fix the whole chronic problem and get things moving in the right direction, instead of backwards.

 My doctors have told me that sometimes, in rare cases, pregnancy can make it worse. After I had Jax, I could confirm that that would be the case for me. When Jax was 9 months old, I had another laparoscopy to clean it out. The pain was pretty unbearable before that, and the surgery helped quite a bit.

It appears that I’m going through the same thing after my pregnancy with Jory. She is 8 months old, and I just got my first period in 17 months. It’s bad. Bad doesn’t begin to describe what I’m going through. It has always caused horrible pain, but it has never, ever been like this. I was awake Saturday night until 6am with cramping and stabbing that left me writhing and screaming and telling Trav I wanted a hysterectomy immediately. I don’t know what to do now.

I’m guessing that the slight uterine contractions caused by nursing, in addition to the endo on the outside of my uterus  causing internal bleeding right now, is probably the root of the pain.

So do I stop nursing? One of the only ways to get rid of the pain is not to have a period, but that type of birth control would surely wipe out my milk supply so I can’t take that risk.

And we want a couple more children. Not for many years, of course, but how long do I have to deal with this? And if we do wait a few years, will I even still be fertile enough to get pregnant again?

So many things I can’t find answers to. I am 25. I don’t want a hysterectomy before I’m 30 and long before we are finished having children. Does anyone have any experience with this?

Comments

  1. 1
    SalenaLee says:

    So sorry to hear what you are going through. After going through secondary infertility I had a laparoscopy to check for endometriosis. I have mild type but the pain used to be unbearable when I got my periods. So much so that every day 2 of my cycle I had to stay home from work. After the procedure and now 5 pregnancies and 3 babies later, the pain is not so bad. I haven’t had any signs of my endo getting worse and I had no signs of it getting worse after each pregnancy or nursing. I nursed my last 3 between 18 and 23 months but had to stop due to getting pregnant. I would discuss with a trusted doctor and get second opinions from specialists before you make any permanent decisions. There are some things you can do but it’s been so long I don’t remember all that was discussed with me. There is a website that is pretty helpful but I can’t remember where it is. I’m sure you have heard of this one but here it is anyway. http://endometriosis.org/

    I hope you get some answers and some relief quick. I feel for you. Take care.

  2. 2

    I’m so sorry you have to have to go through this. My dr is pretty sure I have endometriosis, and I don’t know what to do. I’ve been bleeding every other week for 3 months, and the pain I get in my left side is nearly unbearable. Ultrasounds have showed nothing, so the next step is a laparoscopy. I hope you find relief soon. :( sending you hugs.

  3. 3

    I hate that you have to go threw all that! Can you use a Mierna? I had it & it stopped by period the whole time I had it. I really hope you get some answers soon, I will keep you in my prayers.

  4. 4
    Danielle McKee says:

    I have no advice or insite to help you with your endo but I do want to say thank you for sharing your personal struggles with the blogging world. I have been going through a medical issue and find it comforting when I find other blogs that share their medical drama. Its nice to know your not alone and I hope that you find some answers. Good Luck!

  5. 5

    Oh my word You poor thing. I had heard of this but never knew the symptoms. I’m not sure what the best answer is for you and your family but I’m sure you will reach a decision that proves itself right. Luckily there is so much support out here in cyberspace.

  6. 6

    Oh Becca … I so understand. My Mom has endo. She has had 8 pregnancies, 3 successful. I have endo. My sister has it. It is awful and I completely understand the desires of your heart and the fear. I can’t tell you what to do … but I can certainly pray for you. Please know you aren’t alone! Love ya.

  7. 7
    Amy Shepard says:

    I am so sorry you are dealing with this pain! I can totally relate to the endometriosis. When I was in my late 30’s/early 40’s it began to rear it’s ugly head in an increasingly unbearable way. I would sit at my desk at work in so much pain I couldn’t walk. I had laser treatment thru laproscopic surgery. It helped for about 3 months and then it started all over again. The GYN suggested a hysterectomy but before that my insurance required her to try every other treatment known to help first. I did do Depro Prevara, (bad memory here – might have the name wrong), injections which were once a month I believe. Helped slightly but still was in horrible pain and not just during my period but all the time. Eventually I did have a partial vaginal hysterectomy where they left one ovary in. Again 3 months later the pain started up. This time I had a full surgical hysterectomy and finally that horrible pain was gone. The Dr. said the endometriosis was beginning to cover my bladder and that would have led to even further problems. I know this isn’t the answer you are looking for as in my case we had 4 children and were not planning any more but wanted to let you know that I totally understand your pain and frustration! If I can be of any help or support at all please feel free to email me at amycrops2@aol.com.

  8. 8
    julie o'neal brymer says:

    Becca, I am so sorry you are going through this. I have endo, but not to this degree. I can identify on a tiny level with weighing all of your options and trying to pray over decisions that impact you and your family in big ways at an early age. I pray that God would heal you and provide relief. I also pray He would give you direction as to a path forward and peace that affirms those choices. Love you!

  9. 9

    i have no experience, but one of the daughters of jenny from zachsgang.blogspot.com does. although she is only 19, she had surgery last year that i think was more than just “cleaning out” and may have gotten rid of it all? i’m not sure, but you can check it out, and talk to her about the procedure she had done!

  10. 10

    Awesome thanks so much, I will check out that link!

  11. 11

    Thank you so much Julie! You are such a sweet friend and I really appreciate your support. <3

  12. 12

    Thank you SO much for sharing your story! I’m so sorry you have had to deal with this, and I will definitely save your email. I’m so glad you are now pain free & that you were able to have 4 children, what miracle babies!!!

  13. 13

    Thanks so much Candice, I’m so very thankful for all of the support via the interwebs, sometimes I’m not sure what I’d do without it!!

  14. 14

    Thank you so much for appreciating my honesty! It’s not always easy to be open and put it all out there but I’m usually glad that I did and the support is so overwhelmingly encouraging!

  15. 15

    Thank you so much for sharing your story, and I’m so sorry you’ve had to endure this too. I think another surgery is my best option at this point, and I’m hoping it can significantly help with the pain. I’m so glad you’re not in crazy awful pain anymore and that you were able to have 3 babies!

We Love to Hear From You

*

&