April 17, 2012

Vajay-cation: My Life with Endometriosis

I'm on vajay-tion.

Okay, so it's not directly related to my "vajayjay."  That's the only word that could fit with "vacation."  My name is Autumn and I have endometriosis.  I'm recovering from the third surgery I've had in 9 months to treat it and I'm hoping it's my last.

Curve Patterns monotype print by SmidgeonPress on Etsy

Some of you may be thinking (that is, if you could get past the title) "TMI."  When it comes to health, there is never too much information in my opinion.  I want to share my endometriosis story because I want girls and women with this condition to know that they are not alone.  If I can comfort one person with this post (and hopefully make a few prudes blush) it will be worth it.  There should be no shame in having endometriosis!  No one asks for it and you should not feel embarrassed talking about it.  If other people are uncomfortable talking about reproductive organs, that is their problem, not yours.

According to the U.S. Library of Medecine's website, endometriosis is a female health disorder that occurs when cells from the lining of the uterus grow in other areas of the body. This can lead to pain, irregular bleeding, and infertility.

Last June, I had a diagnostic laparoscopy to see if the unbearable pain and heavy bleeding I've endured since my first period was in fact, endometriosis.  You cannot and do not have endometriosis if you have not had a diagnositic laparoscopy.  I cannot tell you how many women have told me, "Oh, I have that" or "I had that until I had my first baby."  Um, no.  Your doctor can speculate but he cannot diagnose you with endo unless he looks directly into your abdomen . . . and a doctor can only do that though a diagnostic laparoscopy.  Think of it as an initiation to a club, only no one wants to be in it.  I like to think of it as a kind of Sorting Hat like in "Harry Potter" . . . only you're unconscious and on a gurney.  Sure enough, my doctor found some tissue ("Gryffindorrrrr!"), though not a lot.  He cautherized what he saw and that was that.  I went home the same day.

Cure Endo shirt for Endometriosis Awareness by CreateSewEmbellish

Two months later, the bleeding and pain got worse.  Much worse.  I wound up in the ER (biggest waste of time EVER).  My doctor said I probably needed a hysterectomy.  A part of me knew this was coming.  Though I'm no Michelle Duggar, it was still an emotionally painful decision.  I don't really like to talk about it.  It was the right thing to do but that didn't make it any easier.  In October 2011, I had a hysterectomy.  My doctor performed a supercervical hysterectomy, meaning, he left my cervix in.  He claimed it would be easier for me to recover.  A couple of months after the surgery, I was at my endocrinologist (I have Hashimoto's Disease as well) for a checkup.  When I told him my cervix was left in, he looked at me with a puzzled look.  "Why on Earth would he leave your cervix in?"  This was a question I would be asked several more times by different medical professionals.

After my hysterectomy, I never felt "better."  I was in a constant state of pain that was increasing by the day.  Finally, I decided to see a specialist.  I Googled, and the first result I came to was for Dr. Furr.  Now really, what are the odds that the first result was for a specialist in my town?  I live in Chattanooga, for goodness sakes!  I read up and heard lots of good things about him.  I was able to get an appointment and it was a totally different experience.  For example, I use a heating pad A LOT and have for years on a daily basis.  As a result, my skin has a mottled, almost bruised appearance (add that with stretch marks and the 8-9 surgery scars and it's not a pretty picture).  My other doctor was like, "Why does your skin look like that?"  Dr. Furr took one look at my belly and said, "That's from a heating pad isn't it?  You poor thing."  I have never felt so relieved in my life!  I knew I was in good hands.

Celtic Knot Heart Yellow Endometriosis Struggle by Onuava on Etsy

Then he told me about the procedure I needed to have.

I needed to have my cervix removed because it was covered in endometriosis.  My fallopian tubes were next and my appendix as well.  Finally, I would need to have most of my abdomen scraped to "excise" the tissue.  Dr. Furr said that burning endometriosis does not completely destroy it.  It must be excised to remove it.  He has many years of performing this specific surgery so I decided to go along with it.
It's been just over 2 weeks since that surgery.  I'm still in lots of pain but believe it or not, I'm healing much faster than I did with the hysterectomy (even though my hysterectomy required 3 incisions and this past surgery required 6).  I really hope and pray that this surgery will improve my quality of life.  I have faith it will, but endometriosis has no cure.

For those of you with this condition or suspect you have it, here are some things I've learned in how to cope with endometriosis.

1. You are NOT alone.  Millions of women suffer from this condition.  Search for support groups and message boards if you feel you need extra help.

2. Be proactive and take responsibility.  One of the nurses prepping me for surgery told me she has a friend with endo who had been through 28 laparoscopies and refused to change doctors.  If something doesn't feel right, get a second opinion!  You shouldn't feel guilty for changing doctors.  It's your health so take control of your treatment.  Many people, whether family, friends or co-workers, count on you.  Take responsibility for this disease and do what you have to do to make it better.  It's easy to become overwhelmed about the cost of treatment or who will step in for you if you have to have surgery.  Don't let those details keep you from doing what needs to be done: getting better.

3. Ask for and accept help.  This is one of the hardest ones for me.  I have a four year old son and I need a lot of help to make sure he's taken care of.  Whatever help you need, be willing to ask.  You will be surprised at how many people have been waiting in the wings to help you.

4. You are not your illness.  One of the most difficult things about a chronic illness is the loss of identity. It's hard to go from being an active person to having to rest or spend time in the hospital.  In the end, life is not about what we do but who we are.  Bad health can rob you of your life only if you let it.  Avoid being the victim . . . it's a waste of energy and only burdens those around you.  You are not your illness!

5. Don't compare yourself to others, for better or for worse.  Your situation is unique to you.  Everyone has trials.  We don't know anyone's story except our own.  Comparing will only bring you unhappiness.

6. Count your blessings.  It's easy to dwell on what's wrong when you're sick.  Take note of any symptoms you have, share them with your doctor and leave it at that.  When you're in pain or frustrated, take a moment to relax and make a list (mentally or physically) of the great things in your life.  This will give you the push you need to get through.

7. Never give up.  It's very tempting, but don't do it.  There is always, always a reason to keep going.  If you don't do it for you, do it for someone you love.

I hope this isn't too presumptuous.  I don't have a handle on this advice myself!  It takes work and constant awareness to push forward when you are sick.  I hope that this helps someone out there who needs it.

Faith Dream Believe Spina Endometriosis by ShadesofAwareness on Etsyhttp://www.etsy.com/listing/91507551/cure-endo-shirt-for-endometriosis?ref=sr_gallery_3&ga_search_query=endometriosis&ga_view_type=gallery&ga_min=0&ga_max=0&ga_search_type=all


luci said...

Good for you for talking about this! I had different problems, but all were in my abdomen. I have had both of my fallopian tubes removed and one ovary. The fallopian tubes were lost to ectopic pregnancies and the ovary due to a cyst. 4 surgeries in my tummy overall. Keep your head up and your heart and mind open and you will do well! I wish you a speedy recovery and good health!!!

Heidi@TheMerryMagpieVintage said...

Autumn, thank you for sharing your story! I think you're pretty awesome for enduring all you do and doing your best to keep a positive attitude.

I have some dumb questions about endometriosis: if you don't have a uterus anymore, why doesn't that make the endo just go away? How do the cells from the uterus get into other parts of your body like the inside of your abdomen?

BiblioBags said...

Heidi--A lot of endo tissue is microscopic so it's likely the doctor missed some of it. Not to mention the fact that the first doctor said I had just "a tiny bit" of endometriosis . . . and after this past procedure my specialist said I had "a lot" of it! I don't think it magically grew like a Chia pet over a period of two months. I think Doctor #1 just didn't have enough experience with endo and missed a lot of it in both surgeries. Also, there is so much we don't know about the condition. We do know that it feeds off estrogen and I do still have my ovaries. I'm hoping to keep those so I don't have to deal with hormone therapy and menopause if I don't have to. A lot of people now are trying to say that hysterectomies aren't necessary, especially if the patient is young. In my case, even though it was a difficult decision, I know I made the right one for me. It's hard but I think it's the right thing to do if you're suffering.

Tina said...

I had no idea you went through all of that. This is really inspirational. Thank you so much for sharing.

Anonymous said...

What a great statement for Endo! I was diagnosed 11yrs ago and since have had 3 surgeries, one of which was excision. I now need another and my question for you is with regards to Dr. Furr. I have narrowed my research down to him and another doctor and am wandering how well you feel he did with your surgery and how is your pain, if any, since. Thank You so much for sharing your story....after all the many I have read, not only did this one hit home, but you have inspired me to not totally give up. :) So, Thank You!- Leah (Tallahassee,FL)

BiblioBags said...

Leah--it's so great to hear that this actually meant something to someone else with Endo! Thank you so much. Unfortunately, after my surgery in March, I developed an ovarian cyst. It grew so big that I had to have surgery this past Friday! Dr. Furr had to remove my ovary along with the cyst. So, even though I have not yet been pain free, I wholeheartedly recommend Dr. Furr. If not for his constant vigilence with my cyst and sensitivity to my symptoms, I could've had much worse complications (it doubled in size within a week). He is extremely knowledgeable and an amazing listener. He has an email address and he actually reads emails and answers them! He is sincere and has actual sympathy for his patients. He also has a great staff. When I found out on Wednesday I would have to have surgery in two days, I walked out of the exam room into the hall where two of his nurses were waiting to give me hugs. My former gyno did my first two surgeries and Dr. Furr did my other two and there was a marked difference in how my scars healed, etc. Also, Dr. Furr has a pain specialist at his practice, Dr. Nieves. I met with him this past week and he is amazing. He literally told me my medical history after I told him only a few symptoms. These doctors/surgeons know Endo and know how women work. They are awesome and I hope you can get to meet with Dr. Furr. I couldn't recommend him more! I hope he can help you. Keep in touch and let me know how things go for you! Good luck and thanks again! Autumn

Anonymous said...

Thank You Autumn! Hearing your testimony with Dr. Furr makes me feel a lot better. I will try and email him soon and then if he feels he can help me I will then have to fight my insurance to send me to him since he is considered out of the area. I had to do this last time to go to a surgeon in Atlanta and they approved it, although it took them 8 months. I greatly appreciate you answering me back and wish you the best with your Endo. I will do my best to let you know how things go! Thanks again, Leah