My Endo Story

I realized I explain it but said never really posted my endometriosis story on here. Sure bits and pieces have come up, but never just a post dealing with endo. After having to join up with some endo sisters on Twitter (follow me: sonjathegreat) to battle misinformation about endo, I realized how important it is to get my story out there.

**Please note, this is my own story, my own experiences, my own decisions made with my own doctors about my own circumstances. I am not saying something that worked for me will work for you, or what didn't work for me won't work for you. I am not endorsing or slamming any product, just giving you recount of my endo story as best I can.

I can't tell you when I got my period. It was that uneventful for me. I think I was in 6th grade, maybe 7th? I was like...what's all the fuss about, just make sure I have pads and no big deal. No cramps, no pain, nothing. It came regularly, could pinpoint the day to expect it, no problems. Stayed that way for years.

Then June 2001. I started experiencing light cramping before my period came. No big deal, just take a warm bath. Otherwise it was normal.

July 2001. I had just turned 17. I was with my dad and brothers in Minneapolis watching the Twins play the Mariners for a three game series. I was so excited, I was going to see Bret Boone (he used to play for the Braves and was one of my fav players) and it was going to be our first look at Ichiro. Somewhere during the games I started having a really bad pain in my right abdomen. Of course your first thought is omg it's your appendix so I was taken to the closest hospital to see what was going on. After ruling out my appendix, then what else is in that area?

Girl stuff.

Yeah, it was then I experienced my first pelvic exam. The doctors who did it were really really nice, and talked to me while they were doing it so it wasn't too bad, but I couldn't believe I was doing this, cause you learn in health class that you wait til you're 18 or when you become sexually active, and I was neither! Nothing abnormal was found, they said maybe a normal functional cyst ruptured, and if I still had pain to follow up with my OB/GYN at home. So I wasn't dying, was introduced to the wonder that was Motrin, and was sent on my way.

August 2001. My pain did disappear but alas, it came back, so my parents and I made an appt with my local GYN. After listening to my symptoms, he suggested it was endometriosis, and after discussing it, we scheduled my first lap.

Great way to start off my senior year in high school, huh?

I was told by the Dr that yes endo was found, but the pathology reports came back negative. He couldn't explain it and said it was definitely endo.  He then suggested Lupron with addback therapy, and it really didn't do anything for my pain. Because Lupron didnt work for me, during an appt he sent me out of the room, talked to my dad and explained to him that all my pain was because I was having problems in school.

Um, yeah, my senior year had JUST started, when my pain started it was in July and I was at a baseball game. He's so freakin lucky I wasn't in the room. But yeah, my dad explained to him that we were no longer going to be seeing him.

Dad and I spent the first semester trying to find a doctor who could help me. I don't even remember how many I saw. I saw GI's, Urinary specialists, and even did some physical therapy in case I tweaked a muscle. Nothing helped. They all said it was most likely endo even if pathology said otherwise.  My pain was definitely related to my period, but even the GYN's we found couldn't do anything for me, until we found my current GYN. 

She suspected I had endo, and suggested I try Lupron again, but this time without the addback therapy. I did this the winter of 01-02. During this time I was an emotional, moody mess. Okay, disaster. I remember bawling when the Yankees lost the World Series, and I wasn't even that big of a Yankees fan then, and I spent Christmas Eve locked in a bedroom because my brother was teasing me like he usually did, but with the Lupron I couldn't deal with it. It did help with the pain, tho.

My senior year was very tough to get thru. I almost failed pre-calc (D-) and I had never come even close to failing a class before. I was missing school due to the pain and also for doctor appointments. Teachers helped me out as best they could, but there's only so much that they could do. Only a few close friends knew what I was going through. Do you know how awkward it was to explain to friends why exactly you were on birth control pills? Then there was prom. To get thru the dance (which I sat thru anyway) I had to take narcotic pain meds, and I went to bed right afterward, not even making it to the post prom party.

The summer of 2002 I spent at home. We went down to the Mayo Clinic to see if they had any new ideas for me, and they really didn't. Pretty much a waste of time. Esp when I was told that no, it wasn't endo.

By this point, I had been starting to educate myself on endometriosis and joined some online support groups.

I started college in the fall of 2002. By that time my treatment was birth control pills, still having a period ever month. I managed to get thru the first semester, but my finals were done poorly because they landed right at period time. The next semester my GYN put me on Depo Provera, which really helped my pain.

Let's talk about my endo pain. It was horrible. I can't even describe it. Like hurts to move, Lortab won't help, heating pads don't help, omg just let me die pain. Every day. It started out just being around my period, but then it became every day. I couldn't leave the house. I remember having to ration my energy. If I had a class to get to, that means I couldn't shower, couldn't be cute, only wear comfy baggy sweats, and come home and collapse on the couch. Eat vs clean. If I showered I would sit on the toilet for 10 minutes afterward to recover. You have no idea how many hours of Law and Order I've watched because that's all I could do. I couldn't read cause I was taking narcotic pain killers so I couldn't concentrate. I watched all my friends from high school graduate from college, get jobs, start families, and where was I? On the couch. I can't even continue to write about this right now. It's bringing back too many memories of being curled up in a ball in pain.

Eventually, like usual with me, the med stopped being effective. I went back on birth control pills, eventually had to stop going to college because the pain was too bad. I made it thru three semesters. Which brings us to what, 2003-4?

I apologize for the lapse in dates. Things really blend together and I really don't remember what exact treatment I did when. At this point I was needing a lap every year. I couldn't work more than PT retail, couldn't go to school, and was being totally supported still by my parents.

My last lap with my regular GYN was Dec 19, 2007. I had total pain relief until the evening of Dec 25, 2007, when the pain came back. Post-op infections and complications were all ruled out.

I knew then my GYN couldn't do any more for me.

I tried acupuncture, which did help somewhat. My periods were easier, I was able to get off the narcotics and only use OTC pain meds, but I knew the problem was still there.

I had been active in online endo groups, and every once in a while someone would post about excision surgery. I researched it, talked to patients, and then forwarded info to my parents. We decided on going to the CEC in Atlanta, GA.

I contacted them, sent my my records there, and talked with one of the doctors there and he was confident that they could help me.

I had surgery there March 20, 2008. I had Stage II endo in about eight places, with possible adenomyosis. There were also adhesions. The dr also did a presacral neurectomy, which cut the nerves to my uterus. We all felt surgery was very successful, and I was put on continuous birth control pills (first Yaz...had horrible mood swings on that, then back to my faithful Yasmin), hoping that the adeno wouldn't be a problem for years, now that the endo was excised and gone.

I felt great til July 2008. Then I started feeling the familiar bowling ball type heaviness in my middle abdomen, severe pain that narcotic pain meds could only take the edge off, and had to stop working again. After consulting my doctor in Atlanta, my local GYN inserted the Mirena IUD, to see if that would help keep my uterus happy.

It did for a while.

I started reading the writing on the wall. My uterus was diseased with adeno. Nothing was working. Then we pick up with the hyst story, which I have posted before.

It was really hard writing this blog. Remembering that endo robbed me of so much. 1/3 of my life.

Friends.

Jobs.

School.

Classes.

Social events.

All the pain. The hopes and the disappointments of treatments and doctors, and the hopes again. The fear I have of it coming back. Thankfully that pain and bleeding went away and I've had no problems since, but I'm still afraid.

And now I struggle to pick of the pieces of my life and start again at 25.

I need to stop writing before I fall back into the trap of what I have missed, rather than trying to balance it out with what I have also gained. Which will be another post.

My endo pain returned February 25, 2010.  Alex's 6th birthday.  After ruling out cysts and everything else that we could, my doctor and I decided that an exploratory surgery was in order.

I had surgery in April.  My endo had returned.  Back on birth control pills.  The pain was worse on my left side, and nothing was helping, and I hated popping Lortab again.

I had my left ovary and tube removed in June 2010.

That helped, I was still continuing taking birth control pills, and then I pretty much hurt only after having sex.

I then developed Fibromyalgia.  

That kept the endo manageable until the fall. 

Then the pain kept getting worse and worse.  My local doctor was booked.  The Mayo Clinic turned me down.

I found a doctor (Dr. H) four hours away that did excision.  He said he could help me.

I had a laparotomy in August 2010. 

I was put on Danazol after surgery, to suppress things.  I was pain free for a few weeks, but then my pelvic pain returned.  Dr. H said that it was probably because my pelvis was so used to hurting for 10 years that it doesn't know how to do anything else.  He said I needed pelvic floor rehab.

I started the Pelvic PT in November 2011.

It is helping but it is a slow and steady progress.  The use of percocet  has dramatically lessened, unless I do too much or have too much sex.  I have pretty good days but I still can have pretty horrible days as well.

**Updated March 2012**