What National Infertility Awareness Week means to me

I didn't even know that there was an awareness week for infertility. Guess I know now. Infertility means a lot to me. Right after my 30th birthday I had my hysterectomy. The admissions lady at the hospital asked if I had children and I said no. The decision was not an easy one. A few weeks prior to surgery I was going to the doctors office to have my IUD replaced and having it taken out was no big deal but when he attempted to put it back in. The pain I felt was unreal, and it lingered all day. I never swear in pain but I did and Kip kept apologizing and it wasn't't his fault. He told me then he suspected Adenomyosis, which is when there is endometriosis inside you uterus and the only solution would be a hysterectomy. He told me to think about it. I remember driving home alone with a hospital heating pad and my seat warmers on, being stuck in traffic on 95, I was trying to not vomit because the pain was so bad, and I kept crying because I figured that would help ease the pain. I told myself I never want to go through that pain ever again. So the next day I scheduled my hysterectomy.

Even though I know it came with a big price of never being able to have children, I know now that I made the right decision. It wasn't easy recovering, it was the most emotional rollercoaster there was. From not being able to look at babies without crying to suicidal thoughts. That year was a struggle. Yes the pain of the uterus trying to literally kill me is gone, but the effects of endo that remains inside my body continues daily. It isn't as severe as it was but it's enough to make you question everything.

National Infertility Awareness week means so much, it remind me that I gave up a part of my life that I can't get back. I've always wanted children, I wanted to experience having my own children. Now my only option is to adopt, which with my salary that will not happen. I do know that maybe this was in the cards for me all along. For now I will settle being a fur mama.

To eat or not to eat

The one thing that totally boggles my mind is when you have to watch what you eat. I typically eat the same things everyday and it's mostly stuff I have cooked ahead of time. Thanks to endo whatever you have been eating, even though it is the same, can just find it's way of messing up your system. We won't go into the lovely details but it is frustrating, and I can understand how women with this disease can reach their breaking points because clearly I am right there. Being up all night I started doing what I do best and read up on some things and it lead me to leaky gut syndrome or whatever it was (it was 6 am at this point). I didn't realize all the years of birth control, ib profen, Tylenol #3, naproxen, and whatever else the doctors have thrown at me could damage your intestines. It also doesn't help that part of the endo was excised from my intestines. This disease super sucks!! I have had it. Now I have to figure out what is safe besides club crackers and water. GRRR!!!

It is perfectly fine to lose your sh*t

I haven’t been having a good few weeks. Stress has taken over and so has my heartburn, endo flares, and everything else. Pretty normal for me to have a lot going on but my face is starting to break out like a 16 year old. This has only happened a few times. The first time was in high school then I went on accutane, which do not ever go on that stuff, please! It’s so bad for your body. Anyways, nothing seems to work and I’m thinking my spiroactelone that I take to balance my hormones isn’t working. I am usually pretty good at not really caring what I look like but this is killing my self esteem for sure. I have graduation in a month and my trip and combined with everything else I need a namaste moment or a one way ticket to someplace warm. I know people juggle far more worse that I do but I am allowed to lose my shit every once and a while and so is everyone else in this world. We are all normal people dealing with so many so if you have to dance it out or scream it out, go for it. I tend to put on a killer playlist or throw on my karaoke app and sing my worries away. As always in life, these days and weeks are just that, and things will be better. Well let’s hope so because my face is literally killing me here.

Relationships.. Lack of

Relationships aren't easy, especially when you throw a disease that has no cure and endless flareups in the mix. When it comes to my life and the long journey of broken hearts, it never really became complicated till the men I dated focused on my lady parts instead of my heart. Of course I was naive back then and was afraid of losing the person I was with so I tried... too hard for sure. It all comes down to do we really need someone just to feel alright in our own skin? That was my blanket for many years. It wasn't until I was with someone that took my kindness for granted many many times that I saw that I was being taken advantage and I was in fact scared to be alone. I was broken down so many times and it took me breaking down and finding the truth (thank you God for that) that I left and never looked back.

I may have been flying the solo wagon for a few years and I have to say that when I date someone and get that feeling, then I trust my gut. Why settle for someone just because you think that things will change? No thank you. I also think pain changes you, being torn apart and well literally flipped almost upside down (hysterectomy humor) changes the way you feel. I may have the worst self confidence ever and pretty much can't stand what I see in the mirror most days but I know that one day when I do find my person, that I won't need them to validate me. What I want is someone that will inspire me, and be there when there are the days that I can't get out of bed, or run and heat up one of the many microwavable heating pads I have. I hope that one day I get the happiness I so deserve because I know I deserve that. Everyone deserves to be loved, to have someone that puts you at the top of their world because that is where you belong.

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.