It has been a little bit since I have posted last. I have been taking some time to reflect on everything that has happened this year and prior years. I don't think I have really sat back and realized how much I have been through and to see where I am now and how I am still here alive and well. I honestly am grateful and blessed, even through the pain and heartache. I have come a long way.
The once girl that was afraid to speak up because I was afraid, is now the girl that stood up in a room full of people sharing her story to a room full of strangers. The girl that was afraid to leave and walk away from relationships, is now the girl that knows what she wants and won't settle for less. There is so much more soul searching. Trust me I am not perfect.
Relationship wise, I used to think that when I was with someone and they cheated, lied, or verbally abused me and left me that I did something wrong, that it was my fault. It was never my fault. That's one thing I tell myself, that it was never my fault, and I should NEVER apologize for being me. So many times I said I was sorry when I did something wrong. So many times I blamed myself. Even recently, I focused on something so much that it took away from who I really was and I started to see myself fall back into the pattern of putting all my effort into someone that didn't mutually give me the same effort. I am glad that I shut that door. It wasn't easy and my heart broke a bit but, onward.
I think relationships are such a mentally draining thing for me. I hate dating, I constantly worry about the what ifs and being self conscious doesn't really help the matter. I am such an old soul that when I care about someone I put my heart and soul into it that when it blows up in my face, which it normally does, I become guarded and shut down. That is something I need to start working on. No matter what I am always me. 110%
So who knows what 2019 will bring, I am hoping to take it as it comes, and to be grateful for all that the good lord has given me. That's for sure. Here's to the almost end of another year, and to still being a bad ass Endo warrior.
Monday, December 10, 2018
Thursday, November 1, 2018
Speaking out
The other day I was asked to speak as well as represent an organization that I stand by 100% and that is Endo What. I was so excited when Casey asked me to speak to school nurses. I am so grateful to her. Last year before my surgery and before I even met Dr. Seckin, I had to go for an MRI. Little did I know it would be a closed MRI and I was freaking out and nervous in general because of everything going on. Thankfully Casey was there for me and I’ve never even met her. What she does for this disease is incredible, especially someone that is battling so many obstacles herself. That’s why I jumped to the chance of stepping out of my comfort zone. I was glad I did.
As I stood in front of a roomful of people that had no idea who I really was, I was thinking to myself that here I am sharing my life with strangers. I had to stop myself halfway through my speech because I never really realized how much I’ve been through and how much I’ve lost and how far I’ve come. When I went off stage, I went back to the table I had set up and a woman came up to me in tears saying that she knows what I went through because she had doctors tell her she couldn’t conceive. It took rounds and rounds of IVF and she finally had her miracle baby. Then years later she the doctor said she won’t be able to have any more kids because the endo was that bad. She didn’t think anything of it and come to find out she was pregnant with her second child. Our stories are different but we share the same pain.
Another woman came up to me because she said her daughter has endometriosis as well as rheumatoid arthritis and she felt bad because she wished she listened to her daughter sooner. I told her that it doesn’t matter because she was listening now and that she’s a great mom for doing whatever she can for her. I wanted to cry because hearing about her daughter, I know what a hard road it will be for her and the pain she’s going through. I am so glad she was able to reach out so her daughter can get the proper care she so desperately needs.
Here I was going there trying to get the word out to school nurses to get kits for their schools and I was listening to all of these woman that has gone through so much.
I am pasting my speech because I already shared it with strangers so why not post it here...
As I stood in front of a roomful of people that had no idea who I really was, I was thinking to myself that here I am sharing my life with strangers. I had to stop myself halfway through my speech because I never really realized how much I’ve been through and how much I’ve lost and how far I’ve come. When I went off stage, I went back to the table I had set up and a woman came up to me in tears saying that she knows what I went through because she had doctors tell her she couldn’t conceive. It took rounds and rounds of IVF and she finally had her miracle baby. Then years later she the doctor said she won’t be able to have any more kids because the endo was that bad. She didn’t think anything of it and come to find out she was pregnant with her second child. Our stories are different but we share the same pain.
Another woman came up to me because she said her daughter has endometriosis as well as rheumatoid arthritis and she felt bad because she wished she listened to her daughter sooner. I told her that it doesn’t matter because she was listening now and that she’s a great mom for doing whatever she can for her. I wanted to cry because hearing about her daughter, I know what a hard road it will be for her and the pain she’s going through. I am so glad she was able to reach out so her daughter can get the proper care she so desperately needs.
Here I was going there trying to get the word out to school nurses to get kits for their schools and I was listening to all of these woman that has gone through so much.
I am pasting my speech because I already shared it with strangers so why not post it here...
Good Evening, my name is Allison Monteiro and I represent 1 in 10 girls and women that have endometriosis. That is 176 MILLION women worldwide. Each of these women can go 8 to 10 years before actually being diagnosed. I was surgically diagnosed at 22. For me, that was 10 years that I suffered in excruciating pain, trying to get anyone I could in the medical field to listen to me. From numerous ER visits, to even having a doctor refer me to a mental health provider, saying the pain was all in my head. I wished that someone would’ve been there to not only help me but also advocate for me. I swear that if someone would’ve listened to me sooner, I wouldn’t of went through 6 total surgeries, one of them being a partial hysterectomy at 31 years old, leaving me without the ability to have my own children.
When I was in high school, I missed so many days of school because the pain was just too much for me to sit for 8 hours a day. When I did go to school and tried to leave early, the school nurse would tell me to lay down for a few minutes and take some Midol and go back to class because it was just a bad period. Endometriosis is not JUST a bad period, endometriosis is a debilitating, devastating disease that causes pain, infertility and organ dysfunction.
This is why I am here today, supporting and representing ENDOWHAT, because educating school nurses about this disease is so important. All of you are on the front lines of care. If my high school nurse knew about endometriosis and was able to help educate and support me, I can GUARANTEE it would’ve saved me from a lot of physical pain and suffering, and it would’ve been great to have someone that believed me,, listened to me, and was able to refer me to the help that I so desperately needed. Even just hearing the word endometriosis from a medical provider as a teenager would have led to me educating myself, and accessing resources sooner. I would have had so many more social, professional, and reproductive options available to me. Our organization strives to provide school nurses more resources so the next generation of girls that are suffering have more opportunities than we had.
If you have taken care of students who have had chronic period pain and felt overwhelmed when trying to help them, please stop by our table. Our organization is dedicated to providing more resources for school nurses so that the 1 in 10 girls and women that struggle with endometriosis are diagnosed sooner and can get the support they need to live their best lives.
Thank You
Saturday, October 20, 2018
Who Am I?
Many are wondering who I am and why did I start this blog. I know I gave a little introduction when I first decided to put everything on the web years ago. My name is Allison and I am 33 years old from Rhode Island. I work full time, go to graduate school and live among the chaos that are known as Max and Winslow- my two cats. I decided to write a blog after seeing so many young women that suffer with endometriosis didn't know where to turn to or they didn't know why no one was listening after failed attempts with doctors. Well to my 176 million women young and old, I am here and I listen. I'm living with it and just know that there are people out there that believe you.
I was first diagnosed surgically at 22 years old after playing doctor bingo, many unsuccessful trips to the emergency room, and feeling like no one believed me. At 22, I will say that I was uneducated with the proper treatment and I didn't know any better. I had two ablations between 22 and 24. Both I feel screwed me up on the long end. If I could give anyone a word of advice, please please PLEASE, find a true excision expert. I feel as though if I would've known that at 22, that I would probably be less worse than I am now. I know that getting excision covered by insurance is a challenge but ladies, you fight every day, and there are people out there that can help you, I was lucky to have my excision covered during my last procedure but having excision, obviously is not a cure but to cut out what is trying to invade your body, to lessen the pain, it is worth it. I had adenomyosis so my uterus was literally trying to kill me and a hysterectomy is not a cure for endo either. The reason I chose to have a hysterectomy was because of the adeno. I couldn't live with that pain, however, I live with the pain of never having children but that's something I have learned to understand that things happen for a reason.
When I am not doing what I can to fight for a cure and fight for this disease I love to travel. Mostly to nice warm places but I am doing what I can to get to Europe next year. There is so much to see and experience and I want to dive right in. Besides traveling, I am such a homebody. I love to hang at home and snuggle up with a good book or binge watch TV. There is no significant other in the picture and there hasn't been for longer than I can think of, but that's fine with me. If it happens, it happens. I will say I am a catch I mean who wouldn't want a bad ass warrior who has two cats and spends 90 percent of their day breaking out in song? 🤣 I mean trust me I wouldn't mind sharing my chaotic life with someone. But, if endo has taught me anything, it has taught me that I am stronger than I think. That, I will not chase someone and if someone wants to be in my life that they will make an effort to be there. I could write a novel about my past relationships, and I could also tell you that I made myself all to available and have thrown myself in something because I just wanted to feel loved. And how did that work out for me ? lol. Love shouldn't be rushed, it should be with someone you trust, and someone that can make you laugh and support you. Now here I am going off topic but not really. I mean everyone deserves to be happy and I honestly hope that all my sisters get that, whatever it may be.
I know that my mission in life is to help people whatever it may be. So to my 176 million women, you are not alone. There are people that love you and support you. Do not give up.
I was first diagnosed surgically at 22 years old after playing doctor bingo, many unsuccessful trips to the emergency room, and feeling like no one believed me. At 22, I will say that I was uneducated with the proper treatment and I didn't know any better. I had two ablations between 22 and 24. Both I feel screwed me up on the long end. If I could give anyone a word of advice, please please PLEASE, find a true excision expert. I feel as though if I would've known that at 22, that I would probably be less worse than I am now. I know that getting excision covered by insurance is a challenge but ladies, you fight every day, and there are people out there that can help you, I was lucky to have my excision covered during my last procedure but having excision, obviously is not a cure but to cut out what is trying to invade your body, to lessen the pain, it is worth it. I had adenomyosis so my uterus was literally trying to kill me and a hysterectomy is not a cure for endo either. The reason I chose to have a hysterectomy was because of the adeno. I couldn't live with that pain, however, I live with the pain of never having children but that's something I have learned to understand that things happen for a reason.
When I am not doing what I can to fight for a cure and fight for this disease I love to travel. Mostly to nice warm places but I am doing what I can to get to Europe next year. There is so much to see and experience and I want to dive right in. Besides traveling, I am such a homebody. I love to hang at home and snuggle up with a good book or binge watch TV. There is no significant other in the picture and there hasn't been for longer than I can think of, but that's fine with me. If it happens, it happens. I will say I am a catch I mean who wouldn't want a bad ass warrior who has two cats and spends 90 percent of their day breaking out in song? 🤣 I mean trust me I wouldn't mind sharing my chaotic life with someone. But, if endo has taught me anything, it has taught me that I am stronger than I think. That, I will not chase someone and if someone wants to be in my life that they will make an effort to be there. I could write a novel about my past relationships, and I could also tell you that I made myself all to available and have thrown myself in something because I just wanted to feel loved. And how did that work out for me ? lol. Love shouldn't be rushed, it should be with someone you trust, and someone that can make you laugh and support you. Now here I am going off topic but not really. I mean everyone deserves to be happy and I honestly hope that all my sisters get that, whatever it may be.
I know that my mission in life is to help people whatever it may be. So to my 176 million women, you are not alone. There are people that love you and support you. Do not give up.
Monday, October 8, 2018
What Endo Feels Like
The question that many have asked me is what does endometriosis feel like? Well I feel that everyones body is different and something that I feel may feel different to another woman suffering with this incurable disease. When I first felt the pain, I was about 11 or 12. I know I was very young. When I had my period it was unbearable, I couldn't sit or stand or lay down. The only thing that worked was rocking. I would sit and rock with my heating pad. No types of medication would touch it. This pain was constant even without my period. After my first and second lap, the pain I would tell my doctors is that Edward Scissor Hands was inside my body, some women describe it as barbed wire. To me, it felt like someone dragging metals objects inside my entire reproductive system. The few months prior to my hysterectomy my doctor was switching out my IUD and he was placing the new one in and it mimicked that same exact pain that I felt but 10 times worse. That was adenomyosis which is why I chose to have the hysterectomy. If I still had my uterus I could swear to you that I would've killed myself. Honestly. That pain was so bad. Now even without a uterus or cervix, the pain comes and goes, and its daily. Some days are bad and some days aren't. There are times where I'm curled up in a ball rocking to stop the pain. I haven't been sleeping lately, that's my new thing, when I sleep I get this jab on my lower left side and it sends chills up my body. It feels almost like someone put me in an electric chair and turned on the power for a few seconds.
Like I said, everyones pain is different and maybe some are the same, but we are all made different and my minor day of pain could be a debilitating day for someone else. As I am sitting here Indian style typing this, I feel the pain pulsating on my left side. That is where my left ovary is twisted and embedded in the disease. I know it will get worse but for now I have to do what I do best, and that's smile through the pain and hope that maybe this pain will go away, that maybe tomorrow someone will come up with a cure.
Like I said, everyones pain is different and maybe some are the same, but we are all made different and my minor day of pain could be a debilitating day for someone else. As I am sitting here Indian style typing this, I feel the pain pulsating on my left side. That is where my left ovary is twisted and embedded in the disease. I know it will get worse but for now I have to do what I do best, and that's smile through the pain and hope that maybe this pain will go away, that maybe tomorrow someone will come up with a cure.
Wednesday, September 26, 2018
Dating When You are Chronically ill
Dating when you have a chronic illness is not only a challenge physically but mentally. Let's just say it can be draining. Prior to my diagnosis at 22, I dated a few people. Mostly they were toxic, and some took advantage of me, but looking back at that I thought I was naive but they were the ones who were complete jerks. There were a few good ones in the mix but I had a tendency of ruining them when things got to close. There was that one guy I almost married, but he never gave me an engagement ring and cheated on me (we won't go into details), I thought that was love and it has taken me a long time to get over that.
I tried dating after the disaster 'foe' engagement/wedding/mess, but at that time I was in and out of hospitals until last year. When someone cuts open your body and you have all these scars, it really messes with your head. I have always been self conscious even when I was skinny, and I noticed that when I went on dates I may have hated the way my body looked but I faked a good smile and attempted to turn on the charm. I never made it to a second date, many of these guys all wanted sex, and when you have endo sex is the last thing on your mind because it's painful ALL of the time. Some called me fat, now mind you I did put the truth into my dating profile that I was sure not skinny.
It's mentally exhausting putting yourself out there, the plan of me being married with children slapped me in the face after my hysterectomy. They say good things come to those who wait, well I may be old and dead by that point. Just the other week, I stepped out of my comfort zone and asked someone out. I thought it was a date however they thought it was a friends thing. Here's the thing, I'm not mad at the situation, it's the fact that I stepped out of my comfort zone. I asked someone out which is something I don't do. It's not easy to make a reach like that. He was honest about what he wanted but I don't think he was really listening to what I wanted and assumed I was looking for a knight and shining armor. The thing is I've taken care of myself after my surgeries (with the help of my mom) but at the end of the day when she leaves it's me cooking and cleaning and waking up every four hours to make sure I'm above my pain level. I've taken care of myself for so long I don't need someone to take care of me. What I want is someone to take me as I am, the good and the bad, I don't need candlelight and romance, okay maybe sometimes, but I also don't need to jump into something right away. I just want to get to know someone and see where it goes. When you have chronic illness it's hard to trust and hard to put your walls down. I'm not saying I'm giving up on dating, but I like focusing on me and if the right one comes along then that's awesome, if not I'm still doing what I do best and that's traveling the world alone and putting myself first.
I tried dating after the disaster 'foe' engagement/wedding/mess, but at that time I was in and out of hospitals until last year. When someone cuts open your body and you have all these scars, it really messes with your head. I have always been self conscious even when I was skinny, and I noticed that when I went on dates I may have hated the way my body looked but I faked a good smile and attempted to turn on the charm. I never made it to a second date, many of these guys all wanted sex, and when you have endo sex is the last thing on your mind because it's painful ALL of the time. Some called me fat, now mind you I did put the truth into my dating profile that I was sure not skinny.
It's mentally exhausting putting yourself out there, the plan of me being married with children slapped me in the face after my hysterectomy. They say good things come to those who wait, well I may be old and dead by that point. Just the other week, I stepped out of my comfort zone and asked someone out. I thought it was a date however they thought it was a friends thing. Here's the thing, I'm not mad at the situation, it's the fact that I stepped out of my comfort zone. I asked someone out which is something I don't do. It's not easy to make a reach like that. He was honest about what he wanted but I don't think he was really listening to what I wanted and assumed I was looking for a knight and shining armor. The thing is I've taken care of myself after my surgeries (with the help of my mom) but at the end of the day when she leaves it's me cooking and cleaning and waking up every four hours to make sure I'm above my pain level. I've taken care of myself for so long I don't need someone to take care of me. What I want is someone to take me as I am, the good and the bad, I don't need candlelight and romance, okay maybe sometimes, but I also don't need to jump into something right away. I just want to get to know someone and see where it goes. When you have chronic illness it's hard to trust and hard to put your walls down. I'm not saying I'm giving up on dating, but I like focusing on me and if the right one comes along then that's awesome, if not I'm still doing what I do best and that's traveling the world alone and putting myself first.
Thursday, September 20, 2018
One year later
Who would've thought that 33 years ago, the perfect beautiful baby girl, perfect by means of the Apgar scale, would be one year post op from yet another intensive Endometriosis surgery. My teenage years spent looking for answers, trying to figure out why no one would believe me. Trying to be silenced with birth control pills and narcotics at the age of 15. When I would go into the ER for pain management, I would be looked at like a junkie and I would be treated like a psychiatric patient each and every time. My first surgeon literally told me to get pregnant. How could I get pregnant when every time I was intimate with my partner I would cry in pain? Hey Doc, just so you know, I couldn't get pregnant even when I had a uterus! I still to this day walk past my first OBGYN's office with my middle finger up. So much time spent advocating for myself and getting a PHD in google searches. Friendships lost, losing myself, and losing the ones I thought loved me. That is the true face of endometriosis.
There are good things about this disease, I wouldn't of met my closest friend and I wouldn't of learned how to speak up for myself. It may have taken five surgeries to figure this all out but even when 5 becomes 6 or 7, I know that I will still be typing away, trying to find a cure, advocating for those that are searching for answers. So here's to one year of still being here, still breathing, still fighting, and still being that beautiful and giving person that I always was.
Ciao
Monday, June 25, 2018
Saying goodbye is never easy
Today was not an easy day. To make such a hard decision like putting down something you love more than anything was the most difficult thing i've had to go through, and i've been through many difficult things. Slob (pumpkin) has been there for me from day one. Not too many people can understand that. Being that I can't have children of my own, he was like my child. He was more spoiled than I was. It is going to be difficult to not wake up seeing him at the foot of my bed or having him and max beat eachother up. Life isn't easy that's for sure.
Friday, June 8, 2018
What's Happening..
Lots have happened since my last post. I finally have my Bachelor's degree. FINALLY. I have decided to continue my education and now I am getting my Master's in CJ in Public Administration. This is only because I want to make myself more marketable when apply for jobs, as well as deferring my loans ($700 a month is too much!) and well, I honestly want to reach my goals. Education is important, it's expensive but important.
After graduation I took a solo trip to Orlando. I wish I stayed down there. I could venture in all the parks and just get lost in it all. I really never wanted to come back. One aha moment I had down there was the fact that I was too hard on myself. I know my worth and I also know that I am a good person and with that said, I am not perfect by ANY means. I make mistakes more than I want to but NO one is perfect. I have just thrown all the bullshit and negativity away. It was starting to make my anxiety and depression out of control. Having to come home from work and cry and ask myself is this worth it because I was sick and tired of making mistakes. I am not sure when the switch flipped but now I toss it into the fuck it bucket and move on. I can't let that bother me any longer. Again I know my worth. What matters is I put my heart and soul into everything I do, and those that notice and understand me will agree and those that don't well, I will pray for you because Ya'll need Jesus. I am soooo DONE with people trying to tell me how to feel or make me feel guilty for being who I am or judging me. First off there is nothing to judge, everything I have surrounding me I have worked for and I was blessed and I am grateful to have. It is a sad world when you have to defend your every move. Thankfully, that aha moment I had turned that switch right off. I no longer let myself get upset over things. I just put it all in God's hands. So I guess that's what's happening. Just me doing me, getting by, keeping true friends close that have always been there for me and just living my life..
CIAO
After graduation I took a solo trip to Orlando. I wish I stayed down there. I could venture in all the parks and just get lost in it all. I really never wanted to come back. One aha moment I had down there was the fact that I was too hard on myself. I know my worth and I also know that I am a good person and with that said, I am not perfect by ANY means. I make mistakes more than I want to but NO one is perfect. I have just thrown all the bullshit and negativity away. It was starting to make my anxiety and depression out of control. Having to come home from work and cry and ask myself is this worth it because I was sick and tired of making mistakes. I am not sure when the switch flipped but now I toss it into the fuck it bucket and move on. I can't let that bother me any longer. Again I know my worth. What matters is I put my heart and soul into everything I do, and those that notice and understand me will agree and those that don't well, I will pray for you because Ya'll need Jesus. I am soooo DONE with people trying to tell me how to feel or make me feel guilty for being who I am or judging me. First off there is nothing to judge, everything I have surrounding me I have worked for and I was blessed and I am grateful to have. It is a sad world when you have to defend your every move. Thankfully, that aha moment I had turned that switch right off. I no longer let myself get upset over things. I just put it all in God's hands. So I guess that's what's happening. Just me doing me, getting by, keeping true friends close that have always been there for me and just living my life..
CIAO
Monday, April 23, 2018
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.
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.
Thursday, April 19, 2018
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!!!
Wednesday, April 11, 2018
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.
Sunday, April 1, 2018
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.
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.
Saturday, March 31, 2018
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.
Thursday, March 29, 2018
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.
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.
Monday, March 26, 2018
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.
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.
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