Do not grow slack in zeal, be fervent in spirit, serve the Lord. Be joyful in hope, patient in tribulation, steadfast in prayer. Contribute to the needs of the holy ones, exercise hospitality. ~ Romans 12:11-13

Feb 17, 2014

I have what!?!?! Really? Are you joking?

Today, I went back to the doctor to get the test results of the lump they removed from my lower left gut. SOOoooo, I finally have a confirmed answer to that long-lived question as to why I have been having pain in my lower abdomen for over a year. 
Drum roll please....


Say what!?!?! Yes, endometreosis - the incurable illness that causes infertility and is often relieved by getting a hysterectomy. 
So my first response to the doctor, after I picked up my jaw from the floor was...
Me: But I have 9 kids...
Doc: Yes, I know, but you can still get it.
Me: I already had a hysterectomy. 
Doc: You did? We'll we do find some odd situations from time to time. 
My thoughts: Say what!? I sure didn't see that coming! 

Now after doing more research on endometreosis I realize that everything I thought I knew about this disease was WRONG!  Not everyone who has it is unable to have children and just because you had a hysterectomy doesn't make you immune to it. 

Quick recap: I had a hysterectomy 2 years ago because my period wouldn't stop.................................................................(No, not that kind of period.)................ I had a bad case of adenomyosis. (not endometreosis) So after fighting to find a cure or a way to keep my ability to have babies, I ended up feeling like I had no other option but to have a hysterectomy. It was the most crushing moment in my life. 
Today may have been one of the most shocking. 

So what does this mean?
 Well, for starters I'll have to go back to my OBGYN, the place where I started this long journey to find the answer to why I have pain. To be honest going to my OB sounds kind-of pointless since I don't think they can do much. After all I already had a hysterectomy so my endometreosis is growing on other interior tissue, and I'm pretty sure that taking out my colon, bladder, or other vital organs won't help me live a more productive life! I know they can remove just the lumps but that needs done every few years. OUCH! Not fun! (I only had one taken out during my exploratory surgery - I have more.)
 To my knowledge there are only a few other options to help relive the pain. One is hormonal therapy. If they want to put me on hormonal therapy, I think I'll say "no thanks". In my opinion that stuff causes more harm than good. I'm a homeschooling mom and I need a clear head! Drugs always mess with my brain. And since endometreosis is not curable, I'd have to be on it for life!! 

The other option may be to remove my last remaining ovary. Humm.... menopause at 36. Let me think? Is that a better option than pain? Well, I'm not that bad yet, so I really don't think so - Especially, when you take into account that it really doesn't fix the problem - it only helps temporarily. 
I'll go to the OB, maybe they'll give me an option I don't know about. But from what I'm reading I don't see much hope for a "cure".

Sooooo....How about some home remedies?
I figure it can't hurt to try an Endo Diet. This diet is suppose to help relive the pain that women can get if they have endometreosis. I first read about it here. And I'm going to order this book. I've already cut out a lot of sugar and wheat from my diet at the prompting of my family doctor. After a few weeks on the "no wheat -no sugar diet" I have begun to notice that the pain has been a little less. So I'll just be adjusting my diet a little more to suit the Endo diet. The worst part of this Endo diet (above and beyond no sugar or wheat) is NO tea!!! I NEED MY TEA!!! 
Well, if no tea makes me feel better, than no tea it will be!  :-)

Thanks to everyone for your prayers and well wishes over the last few weeks. I'm very glad that I now have a name for my pain. It's upsetting to know I'll have to live with this all my life, but knowing what it is has brought a sense of peace to the situation. Thanks be to God for that. 
Have a blessed day!

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  1. I'm sorry, Jennifer, about your diagnosis. And I am sure I am not the first to ask you, and please forgive me if you already know, but are you seeing a NaPro trained doc? And have you thought about traveling to Omaha to visit the Pope Paul IV institute? I have heard so many great stories about them finding the root cause of problems like endometreosis. Anyway, prayers being sent up for you and your family for healing and for discernment.

    1. Hi Wendy,
      Thank you for your thoughts. I did checked into Napro before my hysterectomy when I was having those problems. None of them are on our insurance plan and sadly, we are scraping for money right now. We can't begin to pay for a trip or the treatment. I feel very frustrated and trapped!
      Thank you so much for your thoughts and concern. God bless you for your kindness!

  2. Hi Jennifer, Lots of women have it, but it goes undiagnosed until after a lot of damage has been done. I didn't find out until I had an ectopic pregnancy and the doctor discovered it while I was in surgery. For me, it is hereditary and until the doctors really know this, they won't diagnose it. My first doctor told me - just go on the pill, you'll be fine. Yeah, no thanks.
    So with only 1 tube and lots of other fun thyroid (I don't have one because I had cancer and had to have it removed) and "female issues" I've gone on to have 2 healthy boys. I'm also 36. Don't let age be an issue. Doctors want to scare women who are over 30 because they don't think we are strong enough. God makes us strong enough!
    Not sure why the myth that it only grows around the ovaries is still out there. http://www.millionwomenmarch2014.org/
    Let us know how the diet goes if you choose that option.
    Praying for you!
    Ella M

    1. Wow, Ella, you have had a rough road! Congratulations on your boys! Since I can't have anymore babies anyway, I don't feel I have much to loose. I just want to live as healthy of a life as I can for the sake of my kids. For now I'm planning to try the diet. I don't see much reason to do otherwise at this point. Healthy diets can't hurt! :-) Thank you for the prayers! I'll be praying for you, as well.

  3. I had endo too and was told I might not be able to have children. After my second, the pain got so bad that I was frequently doubled-over on the couch. I ended up with a hysterectomy in 2009 and they left one ovary. When they went in, they found it had begun to spread to my abdominal cavity. I was warned that more surgery(ies) may be in my future. So far, it's been okay.

    I also have gone wheat/gluten-free due to my son's health issues. At first, it was difficult, but now it's much better. I actually dropped four pounds within two weeks of going gluten-free! I'll take it!

    Have you considered essential oils? They may be another way to help naturally. I am a distributor for Young Living and would be glad to help, if you are interested.

    1. Thanks Heather! I'm so glad to hear your's is under-control, but I'm sorry you had to have a hysterectomy.
      I really think that diet helps. I do see a difference from day to day depending on what I eat. I need to start keeping a record of my changes and progress.
      I was on the no-wheat-no-sugar diet for two weeks when I decided to give it a rest one Saturday. Sunday morning I was doubled-over in pain (while at Mass). That really got me thinking.

      I'll have to check on the essential oils idea. Thanks so much, and thanks for sharing your story!

  4. Jennifer, I found you on Catholic Homeschool Moms on FB. My name is Toni Aho and I really appreciate your posts! This is the first time I have read your family blog, and this-as well as your other school one-is the prettiest ever! I, too, am 36 and have both Adenomyosis and Endometriosis. I, too was blessed to have children before finding out about my diagnosis. We have 6 wonderful kids and are ttc currently. I have not really had an issue getting pregnant before, but now we are on the 2nd month of not getting pregnant. Anyway, we do the Creighton model and I was also recommended to seek out Dr. Hilgers. After a quick conversation with the nurses there, we figured it would cost close to $10K for treatment. That is not in our budget, either. I was under the impression that a hysterectomy was inevitable for me, and that only then, would my pain go away. Since you have the pain still, you would pretty much be in my worst case scenario. I am terrified to get a hysterectomy! And to add to it that it might not relieve my pain, boy, would I be so bummed! I am so sorry that you are suffering this way. I'm sure you are offering it up. I don't have much advice for you, other than to say that there are others in the same (or similar) boat as you and we can glorify Him together. Blessings to you, and thank you so much for being a light and encouragement to another Catholic homeschool mom.

    1. Hi Toni!
      Thank you so much for telling me your story. You have both Adenomyosis and Endometriosis and have lots of children?! Wow, I was beginning to think I was the only one! The hysterectomy terrified me as well. I fought it till I just couldn't fight anymore. I was so weak from blood loss. I could barely walk from one room to another. Aside from the mild-to-moderate pain in my pelvic area, I feel MUCH better!
      Had I known I was still going to have problems even after the hysterectomy, I'm not sure how I would have reacted. So I'm very glad I didn't know. I think that was for the best.
      I'm not happy with how things have worked out but I know it's God's will. He has His reasons for allowing this. I try to remember to offer this up. Some days I have a harder time. I just want to curl-up in a ball and cry! But my oldest daughter can read me. On those days, she gets worried and I don't want to do that to her or any of the kids. So I try to keep fighting to just be at peace with this.
      Thank you so much for commenting. May we both do our best to Glorify God during these hard times. God Bless you and your family.

      P.S. Praying to St. Gerard for you. May you have a new little one soon!

    2. Jennifer, thank you so much for the prayers. I know everything is in His time and His Holy Will, so I am good with what he brings or doesn't bring. But I thank you so much, again, for the prayers, and also your blog (did I tell you it's beautiful??;)) for the blessing that it is. Thanks very much. ~Toni

    3. Thank you, Toni! And you definitely have a great attitude! I'm glad to have "met" you!