Awareness never ends

With endometriosis awareness month ending, it doesn’t mean that raising awareness is over.  Doesn’t mean that endometriosis is over because it will never be over. From raising awareness to trying to find a cure.  This is such a tricky disease because there are so many moving parts to it. It has to start at the top with ACOG,  because women need proper standards of care. 

Many of the surgeons are out of pocket and are not covered by insurance which means loans and anything else you can scrounge up just to pay. I was fortunate enough for my last surgery to be covered through a gap exception. I did have to cough up money for the initial visit which was a couple hundred dollars and to some,  they don’t have that type of money laying around. Even if you are one of the lucky ones that get things covered, there are still aftercare that insurance doesn’t cover. Certain things like pelvic floor therapy, acupuncture, massage, Physical therapy and other things that help ease the pain are out-of-pocket.  I have seven pelvic floor sessions scheduled each appointment is not covered by my insurance so therefore it’s about $150-$200 per session which is something that is needed to ease the pain. That is totally bullshit because it something that women need not even women with endometriosis  I know women that need it and don’t even have endometriosis. 

This is only a snapshot of what women are going through with this disease. It is not easy financially that’s for sure. So even though endometriosis awareness month is coming to a close the door way remains open to fighting every single day.

Trust

 When it comes to trust I have a hard time believing that word. Whether it’s in relationships, medically, friendship, and even myself. I think I started to look away from that  when doctors would give me different stories and treatment that was un related to endometriosis.   I would’ve been OK with an ‘I don’t know what is going on with you’. I feel like that I don’t know what is going on with you flows through everything else. My past relationships where the same way. I stayed in these verbally and mentally abusive relationships because  I thought that’s what love is and who else is going to find me attractive and who else is going to put up with me. It wasn’t until my ex “fiancé “if you would even call that cheated on me and still I’m sure this day he will deny it. I was never the same after that. No matter how many people tell you to let it go it’s hard to let go of something that was that traumatic.  All I ever wanted was him to admit that he cheated. Yes I know that was 10 years ago but how hard is it to tell the truth. I will say that experience made me not put up with bullshit  made me not settle.

Just like endometriosis and doctors. I didn’t settle until I found a good team of doctors that actually knew what I was talking about. Like currently, I was referred to a doctor for an endoscopy and I soon as I called to see if they got the fax for the referral the lady was  very rushed and didn’t really want to communicate with me.  Told me I guess you have to wait until June. No worries lady I will take my business someplace else.  Like I said why settle? I will not settle for shitty relationships and shitty doctors.   Even when you’re tired and frustrated try to let go and trust and believe. It’s not easy who even knows if I’ll ever cut the chain. But one things for sure, I deserve everything.

Hey ACOG, I matter!

Hey everyone,

Last year I wrote a blog post directed at Dr. Zahn.  Well this one is going towards everyone at ACOG.
For those that do not know me my name is Allison Monteiro. I am 32 years old and I am one of the 176 million women with endometriosis. I am 1 in 10 and I matter.

 I didn’t really know what endometriosis was until I was about 21 years old. From the age of 11 until my diagnosis I had no idea what was wrong with me. I had painful periods where would have to wear a tampon and a pad,  and two ibuprofen didn’t touch the pain. I was put on birth control pills at 15 because according to my doctor, this will help with the normal period pain that everyone has. I went from Ortho Tri-Cyclen, to six or seven types of birth control pills  trying to cover up what was really going on. When I was in high school I would try to get to school every morning, but the pain was so bad that the only thing that helped was to just drive around in my car. I missed so many days of school that I  almost didn’t graduate. When I was really sick one day and they wouldn’t let me leave my mom had to beg them to send me home. I was diagnosed with IBS because again, doctors had no idea what was really going on so they did what they did best, and pushed as much meds as they could. Here I was at 16 years old taking narcotic pain medicine. I could tell you that the bottle was always full because I hated  how it made me feel like a zombie.

It wasn’t until I was 20 when I went and found a gynecologist I thought could help me. Again, I was put on birth control pills. When that didn’t work she suggested surgery and said that this would definitely help me and at the time had no idea what Endometriosis was so I trusted her. I had my first surgery at the age of 22. I had ablation surgery and then six months later the pain was back. Again more birth control pills and plenty of narcotic pain medication prescriptions. Then the option to go on Lupron came into play because that would only be the answer to all of this, according to the doctor. Lupron  puts your body though a sort of temporary menopause, which was not happening at such a young age. That’s when I started to do my research and read the horror stories of women losing their teeth in their hair and never being the same after. I went back and told the doctor no. And then she wrote me a prescription for Lupron and left the date blank and told me when I was ready to put the date on it. Just like that she wrote me off.

 I began trying to find another doctor.  This time the doctor was out of state so it was a good hour drive into Boston. I remember walking into the center for infertility and seeing all these pregnant women and my heart sank because I never knew if I could be one of those women. I met with the doctor and we went over my options and she suggested another surgery. So again another surgery a year later. Like clockwork, the pain came back even worse this time. I was out of work more then I was before. It’s hard trying to have even employers understand what you’re going through because you have normal on the outside and it didn’t help that the majority of my coworkers were men. When the pain came back I went back up to Boston and this time, Lupron, my very favorite word came back in to play as well as antidepressants and anxiety medications because now this doctor thought I was crazy. I walked out of that office and never looked back.

By that time I ended up not really trusting doctors. But I also started believing what they were putting into my head thinking I was crazy. It didn’t help that I was in a relationship with somebody that would put all this negativity into my head and make me feel that I was crazy. I was in a really bad place I started gaining weight and I just would go to work and stay home on my days off, I sheltered myself for sure. Friendships came and went because I let the disease take over me and I let the disease win at that point. It wasn’t until I started turning to Facebook and found out other women were going through the same things that I was going through.  I kept seeing the word excision and how excision was the standard of care for endometriosis.

There was a doctor that was about two hours away and everyone said how amazing he was so I went up there to see him. I walked into the office not expecting anything in the moment that he came into the room with his mustache and bowtie I almost laughed out loud because he reminded me of my dad.  He asked me right off the bat what I thought the definition of endometriosis was. I was totally caught off guard. He let me talk about anything and everything and actually showed me what endometriosis was, and he didn’t think I was crazy. He actually understood me for once, and finally someone actually understood me and didn’t think I was crazy.  We agreed to the excision surgery and he did say that he would get “every last stinking bit”.  Now we are up to surgery number three. The surgery was different I actually feel better. It was a six hour surgery in total where he had to clean up previous mistakes from the last two doctors before. Ablation damaged my body. Unfortunately that wasnt my last surgery.   By then I understood why, I had adenomyosis, and this doctor actually took the time to explain why he thought I had it,  if he was any of the other doctors I wouldn’t of trusted him but I did.

At 30 years old, I had a hysterectomy. Pathology said I had focal adenomyosis. A hysterectomy is not a cure for endometriosis because there is no cure but I couldn’t take the constant pain because my uterus was actually trying to kill me. It wasn’t an easy decision to make at 30 when all your life you wanted to have children.  But I knew that I was a lot stronger than I ever was.

 Yet again the pain was back this time two years later and I had another surgery which I knew was going to be my last. If you lost count that’s number five. Five total surgeries for endometriosis. It should have been one surgery for endometriosis. If I would’ve known that ablation would’ve damaged my tissues,  then I would’ve never ever had ablation surgery.

 ACOG,You need to understand that your standards aren’t up to par. Ablation is not the answer. We need more doctors that understand,  we need medical insurance companies to understand because a lot of these surgeries and treatments are out of pocket.

 This is just a part of my story. I am  One in 10. And I will not stop. This disease may have taken many things for me but it sure hasn’t taken my ability to fight.