My History ~ PCOS, Adenomyosis and Endometriosis

This will be long, but for those suffering like I did you will understand.

I have had PCOS that I am aware of for about 15 years, diagnosed about 10 years ago. My mom and 2 sister also have it. How about those statistics for you! Getting pregnant wasn't easy, pregnancies were complicated but I do have 3 beautiful children.  I suffer from ovarian cysts, hair loss, facial hair growth, skin tags, insulin resistance,and weight gain to name a few.  I have spent years researching and trying to learn more about this medical condition.  I have always had horrible periods which I chalked up to normal...I mean isn't that what we are all told?  I would bleed profusely with large clots and horrible cramping for 7-10 days and cycles would be around 40 days, sometimes skipping a cycle or two.  In my earlier years I was put on birth control to "help", but I struggled with ones that didn't cause breakthrough bleeding or other horrid side affects.

After I was finished having children, my husband had a vasectomy and I chose to get rid of the birth control.  I did not want something in my system that was just masking my symptoms and giving me other side affects.  This decision wasn't easy though because my PCOS really started to kick my butt, gaining a ton of weight, and become even more insulin resistant. I tried to eat healthy and exercise, but didn't see the scale move much.  I knew I was healthier but the weight just wouldn't budge, I carried it right around my mid section, often looking pregnant.

During the summer of 2016 I joined Beachbody and started drinking shakeology and really started watching my portions.  I was able to lose about 15 pounds after a few months.  I divorced Mtn. Dew, still haven't touched it since July 11 2016, and don't drink much soda at all, just water.  Things were going better, so well in fact I decided to start coaching with Beachbody. I still had to work super hard to even see a little change but at least I felt I was holding ground.  January rolled around and I had gained some weight back, I wasn't perfect over the holidays so I threw myself into eating right and working out harder.  By February I had gained almost all of the weight I had previously lost back, I looked pregnant.  I was devastated, and couldn't figure out what was wrong. I couldn't find anyone to join my fitness group and programs, because who would want to do it if I was throwing myself into it and not seeing any progress.  I will say I do love beachbody and shakeology and haven't given up coaching yet, but I have to take care of me right now.

My periods started getting even more painful, and crampy and clotty.  I was starting to have pelvic pain when I wasn't on my period.  Exercising was excruciatingly painful.  I pretty much fell off the wagon at this point, frustrated and confused.  In April about a week before my period I started feeling like I was getting a UTI.  I normally have this feeling 1-2 days before my period and have for many years. I would go to the doc, they would test, say there was no infection but prescribe antibiotics anyhow. But this was the worst and earliest it had been so I went to the doc.  Of course there was no infection so she sent me me for an ultrasound.  They found a cyst on my right ovary, so they determined it was the cause of my bladder pain.  Since then I have had it off and on, for much longer time periods and at a 2nd u/s they determined the cyst was gone.

So back and forth with the doctor and a referral to a GYN, who was certainly not an advocate for my health.  I did however learn that my first u/s had shown an enlarged uterus and thickened endometrial lining, something the doctor never shared with me.  The GYN did an in office u/s and found my uterus was the size of somebody who is 12 weeks pregnant and the lining was thickened to 20 mm and globular in appearance.  She mentioned Adenomyosis or Cancer.  She took 3 uterine biopsies right there in the office that day, and sent me home to wait.  After waiting almost 10 days the results were normal, she wanted me to take 10 mg of progesterone a day to try and thin the lining, she originally wanted me on birth control or an iud and I refused both.  She would not be addressing any other pain or concerns at that time, and by this time it was July.  I was so confused!

Now I have been down this diagnosis road before with the PCOS and knew that I needed to start researching on my own.  I first joined Adenomyosis Support on facebook and the support and information was just what I needed.  I also joined the Nancy's Nook endometriosis discussion facebook group.   I decided to switch GYN's and demand a hysterectomy (only cure for adenomyosis) which of course anybody with recommendations were weeks out, my get to know you appt. would be August 23rd.  During the 6-7 weeks of waiting my symptoms increased exponentially even though the Provera was supposed to help, I did skip my cycle the end of July but things just keep getting worse. My pain was daily and debilitating.

The beginning of August I felt like I was getting the wind knocked out of me and had chest pain. I went to the ER thinking I was having a heart attack. But they couldn't find anything wrong with me except mildly elevated pancreas levels. I was sent home with just a few pain meds feeling like a crazy person.  I personally think now my pain was giving me panic attacks.  But I also learned endometriosis can be found in the chest cavity.

At this point I knew that I needed some serious intervention, I had been reading about the Nook Docs who are specialists in endometriosis excision surgery. Adenomyosis is kind of like endometriosis only located on the inside walls of the uterus instead of outside. Many women found that along with their Adenomyosis they also had endometriosis.  There are something like 100 surgeons on this list world wide.  And most of them are out of network for insurance.  But I was done messing around with docs just wanting to mask my symptoms or make me think I was a crazy person. I called nearly every Specialist on the west coast.  I was able to get an appt. with one in Portland or an appt. with one in Utah. After talking with their offices I decided that Utah was my best bet, as the surgeon took the time to respond to me personally.

My husband agreed that we needed to find the best surgeon to fix me up regardless of cost.  And we wanted somebody to do the hysterectomy that knew what to look for and how to excise it properly if endometriosis was indeed found.  I also found out that endometriosis runs in my family.  So I put down a down payment and scheduled a surgery date of Sept. 5th.  EndoWest in Ogden UT with Dr. Arrington.  So far they have been great and I finally don't feel like a crazy person.  My pre-op consult is the 30th.  I will be driving 7 hours to get there. Thankfully the hospital has a guest house that is very inexpensive to stay at. My husband will fly down right before surgery to be with me and drive me home.

This is my journey, and I hope an inspiration for you to be strong and educated about pelvic pain and take control of your own treatment.

Christine