When did it all begin and where I am now

Now that I have a much better understanding on what endometriosis is, I know that I've had it since before I was a teenager. I started my period young, about 12. I didn't even grasp what was going on. My periods then were quite heavy, so much that i relied on pads. I didn't even touch tampons til my senior year. I had all the signs and symptoms but I don't think my pediatrician understood what endo was at the time so she said it was a bad period and take midol. I would rock back and forth, pace, and try not to throw up. My senior year I barely even attended school because it was too much pain.

I held on for a few years then by 21 I saw my first real obgyn that seemed like she knew what was going on. We tried a few birth control pills and that didn't help. She suggested surgery for suspected endometriosis. I went for my first surgery and of course was nervous. It ended up being ablation. She found endometriosis and I thought that's it i'm fixed. 6 months later the pain returned and was given the option-more like pushed- into Lupron. I read too many horror stories and at 22 I was no way forcing myself to go through a medically enduced menopause. So I found a doctor at Brigham and Woman's hospital, again went through the same thing and another surgery. This time during post op she gave me an actual stage of endometriosis. Again I thought she knew what she was doing. Ablation was used again. That's when I really started doing my research. 

The pain at this point was worse, and at the time of my last surgery I was in a long term relationship and sex? well yeah lets just say it was the most painful thing ever! So was the relationship ! (lol) 

At this point I was desperate for answers and sick of surgeries that left me helpless. That's when through a few message boards I found an excision specialist. I was used to driving around for answers and I showed up to my appointment, not knowing what will happen. As soon as I sat down he asked me what my definition was of endometriosis. I was completely wrong! Then we went into why ablation never worked and he actually brought out a medical encyclopedia to show me  what was going on. He then scheduled me for excision surgery. 

I walked into the hospital and at this point I was so ready for this to be done. When I woke up in recovery I was in more pain than usual (expected). After a sleepless night I was walking around the next day, which was unusual from previous surgeries. I felt pretty amazing. At my post op he discussed how severe my endo was and that even though he got every last stinkin bit there is a chance I could have adenomyosis which is endometriosis in the uterus. 

Let's fast forward to recently. I found out the other day that I do have adenomyosis. Was it frustrating to hear? Yes and No. I was glad all the endo was excised during surgery and now i'm glad to know that I am not nuts that the pain that is still existing is in my uterus. I did say to him I can't believe I have an angry uterus. 

I am hoping Dr. Sinervo will be able to do my presacral neurectomy so I can save my uterus but at this point, with all the pain I went through the other day, just from him putting in my IUD, something so simple, it disturbed my uterus to the point where I was having trouble walking today. Pain has been shooting down my legs and my back is on fire. I have come to the conclusion that the uterus has to go. I will always have endometriosis but my pain will be lessened by 90%. 

What I am dealing with emotionally is the fact that I won't have my own children. Yes adopting is an option but right now I have to grieve in my own ways. To even type this I am holding back the tears. I can't even tell you how much I've wanted children, how it pains me that I am still single and have no significant other to be there for me. I will say i'm lucky to have an amazing family. I also have my beautiful niece that will be so spoiled more now than ever. I just haven't come to terms with why me?  Why am I being punished for something that i've wanted so much. It's going to change my life even though the scars will remain. I guess you can say it's going to take a long time to get to where I want to be emotionally. 

First and foremost what is Endometriosis

I am starting this blog journey not only for awareness but also for myself because I honestly can't keep everything bottled up inside for much longer.

What is Endometriosis?
It occurs when tissue similar to the endometrium (uterus lining) is found outside the uterus and other parts of the body. It is generally found in the pelvic cavity but can attach to any of the reproductive organs. It can also be found outside the reproductive organs like appendix, bladder, bowel, and rectum. 

Symptoms:
There are so many symptoms but I will just throw out a few. 

• “Killer cramps” – cramps that do not go away with NSAIDS and/or impede the activities of daily living
• Long periods – periods that last longer than 7 days
• Heavy menstrual flow – having to change your pad or tampon every hour to two hours throughout most of your period
• Bowel and urinary disorders – including but not limited to painful urination or bowel movements, frequent urge to urinate, or diarrhea
• Nausea or vomiting
• Pain during sexual activities
• Infertility

There are 176 woman and 1 in 10 girls that are affected. These numbers change frequently. 

Diagnosis:

It can take up to 10 years. Yes you read that right! This is due to lack of knowledge and awareness with this disease especially in the medical community.

Despite what people assume, endometriosis can not be diagnosed with an MRI or CT Scan. Pelvic exams can raise suspicion. (I will touch on that in one of my entries)

Laparoscopic diagnosis is the only way to find and diagnose endometriosis.

Treatment:

This is the fun part (being sarcastic)

The most important form of treatment is Laparoscopic Excision of endometriosis. In normal terms cutting "every last stinking bit of endometriosis out"(favorite quote from my last surgeon Dr. Mackenzie)

There is ablation and cauterization but this is where many doctors don't understand or try not to understand. Ablation is burning the top layer of Endo. When we end up burning ourself with a curling iron or touch a hot pan, we burn the top layer of skin. What happens with the burn after time? It heals and skin grows back. Pretty much the same concept with ablation. (will touch on that experience in a later post too)

A hysterectomy is another medical form of treatment that most think "cures" endometriosis. 

THERE IS NO CURE