Wednesday, August 8, 2012

I feel like hell, the truth behind the hiatus..

I've been debating whether to post this or not,  I don't want to sound whiney or like I'm looking for pity, and it's a lot of personal information but I figure you don't have to read it if you don't want to so here I go.
For several months now I have slowly felt like I have no energy left, that in fact my cup is empty and I have no more to give. I have been struggling with an all time low when it comes to my energy level along with crippling pain for 2 weeks out of each month caused by my endometriosis (one week for ovulation and one week for my cycle). I have always treated my endometriosis with birth control to prevent me from having a cycle and in turn prevent the endometriosis from growing. After I had James the birth control was not stopping my cycle and I was experiencing pain from the build up of endometriosis. I decided to try a IUD, something my sister has had success with when treating her endometriosis. It didn't work. I have been unable to stop my cycle and there for unable to prevent the growth of endometriosis in my body. With each month it has started becoming noticeably worse.
I have altered my diet and have continued to go to the gym a minimum of 3 times a week unless  physically impossible. I was hoping that would help me at least with my energy level, but nothing has changed. If anything I am a little more tired from working out, even though I have gotten stronger and healthier I am still weak and tired.  I have started to rely on caffeine and pain killers more than  anything to get me through the day. In all of this I have felt guilty/bad for my children. They are good kids and deserve a healthy, active, and fun mom.  I want to be that mom.  Delilah will regularly ask me on bad days "Mom when are you going to have the doctor fix your tummy so you can play?" It breaks my heart every time she says it.

I made an appointment with a specialist, it took 2 months to get in, he is really good at what he does and in fact has written several journal published articles on treating endometriosis. I was very excited and anxious for 2 months as I awaited my appointment with him, I knew he was going to be able to help me feel better and more like my self. When my appointment finally came he told me I had 3 choices
1. Get pregnant, the only known "cure" for endometriosis.
2. Go on lupron, a drug that puts your body in an artificial menopause. It is a drug I have purposefully avoided my entire life, due to it's mean side effects, and the reaction my sister had to it. Or
3. Have all my reproductive organs removed, the only permanent solution for endometriosis.
I cried.. right there in his office. None of these were options for me, and he didn't care. He asked me what I had been taking for pain and when I told him ibuprofen he was surprised I wasn't taking narcotics and suggested it must be manageable if I'm only taking ibuprofen even when I told him it was up to 2400mg a day. How can I take narcotics when I'm a mother to two young children? He got up and left me there, crying.
I had hoped he would have offered me a surgery like I have had 5 times in the past from other doctors, a surgery that would remove all the endometriosis and give me a fresh start. It isn't a cure, but it would buy me some time. Time is all I'm asking for right now, I know I will eventually have a hysterectomy and I would be lying if I told you I wasn't excited for that day. I have struggled with pain due to my uterus and ovaries since I was nine, yes NINE!  Who wouldn't want that all to be over? But I still need some time to decide if we are done having children. James is only 18months old and he is a very active, busy, clingy little mischievous man if I've ever met one and now is not the time to have another baby or make the decision if I am willing to have another one. I left the specialists office feeling hopeless. He explained he was unwilling to do another clean up surgery because it would make my future hysterectomy more difficult because of all the scar tissue and when you have had 5 surgeries already it is time to be done with it. (He said that... to be done with it.)
On the way home I made an appointment with my regular gynecologist for a second opinion, knowing she isn't a specialist it was a long shot, but I needed some hope and I was willing to take it in long shot form. The next week I met with her. I gave her my medical records and also told her what the specialist had told me. I came mentally strong and prepared for bad news. She was very kind and told me that she agreed with me and that those didn't seem like good options and in fact personally knows the specialist and was confused he would only offer those options to me. She referred me to another doctor and wished me the best.
I called and tried to make an appointment. The specialist is part of a fertility clinic, when I called to make the appointment they told me she only works with women actively trying to get pregnant but since I was referred they would talk to her and see if she was willing to meet with me. The next day I found out she was and made my appointment to see her. I was so nervous when I went to see her I didn't have the strength to be strong anymore and my emotions were pretty close to the surface.
After waiting in the waiting room for about 3 minutes, the doctor came out to take me to her office, (I've never had a doctor get me from the waiting room). She took me to her office where I told her what the past doctor had said and that those weren't options to me (my way of saying "this is what I've been told so lets not waste each others time with these stupid options.") She was quick to tell me she doesn't think pregnancy is an option especially when it isn't easy to get pregnant and we are trying to rid me of pain and trying to get pregnant could take a year or longer.. a year or longer of more built up endometriosis, more pain. She also told me she would never give me Lupron because of my depression it would worsen it drastically. She then said you are to young for a hysterectomy if you aren't 100% sure you are done having children. Then she said "I think we should do another surgery to clean everything out, if that is ok with you."
um... yes!!
She then told me she was looking at my medical records and my thyroid is messed up. She told me this with out me telling her I had been working out and dieting with no results. She explained that my thyroid is probably why I don't have energy and haven't lost weight. I wanted to hug this sweet woman. She gave me a prescription for my thyroid and even did all the pre-op stuff so as soon as I come home from Utah I will have a surgery. Half way through my pre-op exam I stopped her and told her I had to thank her. 
"Don't thank me yet, I've not done anything yet." 
"You have already done more than others, thank you". 

This year was suppose to be my year, the year where I become the person I want to be for the rest of my life. I have felt bad that I haven't been checking things off my 30 before 30 list like I have been wanting to. I feel bad my house hasn't got the attention it needs in regards to decorating and routine cleaning. I feel bad I haven't been able to cook and do other things I enjoy as much because I am laying on the couch or ground trying to survive or just plain lack the energy.  I feel really bad I haven't been able to be the mom and wife I want to be. It has been difficult being the sick person on the couch unable to accomplish much of anything. After a while you start to question yourself wondering if it possibly is just all in my head and that if I were only mentally stronger I could be that person I really aspire to be. I'm ready to be healthy again, I'm sure my family is ready for me to be too.

All that being said.. I promise I haven't disappeared or fallen into some deep depression. I've just been surviving. Hopefully by the end of September I'll feel like myself again and be able to hit my to do lists strong again and possibly blog a little more. Thanks for everyones support and concern.. I'm still here and can't wait for september. Wish me luck!!


Eve said...

I can't lie - reading about that first appointment I was so choked up and near bawling. I can only imagine how AWFUL it must've felt to be presented with those horrible options after putting so much hope in that specialist. I am SO GLAD you found the right treatment from the right doctor. And that is great news about the thyroid since you have a solution! I am sorry you have hard such a hard year! I bet you are going to feel like a new woman by Dec 17 (that is your bday, right?). It is even more meaningful to begin a new chapter of your life making changes than ending one. That's my two cents. :)

Cindy said...

Michelle, I am glad you finally found a doctor that would listen to you and give you hope. So sorry you have been going through too much pain. I also just started being treated for my thyroid, with Synthroid, and have felt "lethargic" off and on for a while now but just pushed through it the best I could. I hope your surgery makes a big difference in your pain! Good luck, and we are all excited to see you guys soon :)

~GINGER~ said...

Oh, Michelle. I am so sorry you are going through all of this. That doctor, that horrible guy, I want to scream at him and about a million other doctors that don't seem to care about their patients at all. I've run into so many of them, and I know so well what it's like to be ignored or given options that aren't right for you. I'm so very glad you got another opinion!! And BLESS HER!! I hope you feel more up to sharing in the future. I hate that you felt any of those descriptions about sharing. Then again, I am such an open book and share my entire world. But I think my experiences may help others. And stories like these are helpful, they give people the confidence to ask for a second opinion. I am so happy that you did. I hope things look brighter for you as you continue your journey...

Regina said...

I'm sorry you are going through a lot. Life is so hard when you are tired and have no energy. On top of everything else the pain that overwhelms your entire core emotionally and physically. Good thing we are blessed with the guidance of our Heavenly Father who leads us to the doctors who have empathy and compassion for their patients. I hope you feel a little better now that you have shared so that we can give you words of comfort until you are well. I hope time moves a little quicker so that you may feel better soon. Hugs from someone who has shared the same struggles.I luv you, stay stong and feel better soon.

Anna said...

I'm sorry I didn't read this til now. I know you are strong and you and I know I know these situations all too well. Im glad you can tell the difference between a jerk dr and a kind one. And I want to flip the jerk one off and go to his lectures to heckle him. :) wouldn't that be fun?

red said...

You are amazing. I'm glad you were persistent and found the right answer. I think that doctors who don't have endometriosis should be considered experts. Only doctors who do :). I really hope the surgery helps. If nothing else maybe things will be a little less painful for a while. Good luck. Love your guts.

Misty said...

HUGS! You're such a good person. I'm sorry you have been struggling. I'm crossing my fingers for you!