Just wanted to share an update with the horrible time ive been having with my stomach and the pain and burning for now 4 months.
I finally got a scope done (tube in throat) and the experience was better than I thought Everyone was super nice and made me as comfortable as possible. I was put to sleep and funny thing is they said it took so much medicine to put me asleep as much as 5 grown men! Everyone was sitting waiting for me to pass out. Shows how strong I really am I deal with pain so well that my body is in constant fight mode so it never wants to relax to let anything take affect. Also I woke up so quickly as if nothing even happend. The doctor came in which I wondered why because he didnt visit other patients when I was sitting there waiting. He told me my stomach looked red and swollen very irritated and he thinks it could be an infection or even H Pylori. Also that he saw a mass/bulge in my stomach and wasent sure what it was took many biopsies and now I have to wait a month. :(( I saw what he wrote on the paper to get an URGENT CT scan and it showed he saw Sub mucosial stomach lesions.GIST a type of tumor, and a few other things to have the CT scan people look out for. I know its all possible things and it could be nothing but I am left with extreme pain now waiting a month to find out what has been the cause of it for longer than 4 months. My anxiety is high and news like this gets you really thinking about your life and WHY ME type of questions. I have been through a lot this past year I feel I havent caught a break and why I think I am on a happy path something horrible happens to make to stop and re evaluate things. I had a game plan to be healthy eat right diet exercise dont sweat the small stuff and live your dreams. I met someone and my whole life plan just stopped I put all my energy into US, HIM and lost myself in the process.I think when you give so much you forget to check in with yourself and make sure your ok. I put my thoughts dreams goals into him and making us stronger and fixing his life and lack of goals and motivation. AT times felt like a therapist/ teacher giving him all I have learned and accomplished in hopes I could spark something to change. I stopped doing the things I enjoyed and gave 100% into him and seeing that he could be so much better and stronger than what he was putting into this world. I think I make a great Girlfriend I communicate and share very well always have,I am open from day one about my expectations what I want and look for and if you are not there yet or cant give me that then I expect them to bow out, that’s a great thing for a man to do. I am very wise and I never wasted time being a dum lazy teenager and smoked pot or ran around sleeping with a million guys. My priorities were straight I knew I wanted a soul mate a prince charming and a home kids travel help and leave my foot print make a difference. I always put so much pf myself and effort in all I do and who I am with. I struggle with my pain feeling unwell a lot of the time but I put a great front that I can handle it alone. I never want anyone involved in my issues or my life and find it hard to ask for help. Maybe because I’ve been let down so much.I am independent and rely on myself. I was looking for someone with the same ambitions and goals the same struggles and ideas. I don’t like selfishness or making your problems others. I don’t put my illness on you yet people think I’m so strong they shove there problems on me.I think I have tried to help so many people and people in turn put me down or throw there problems on me I physically make myself ill. I get so consumed with life and its evil I actually become sick. I to live a spiritual healthy life, I need to be surrounded by healthy minds and people. I need to be around people who eat well,diet,exercise,Who have had it hard but were strong enough and picked themselves up and moved forward head high. I cannot be blamed anymore ! I want to do yoga and help people through a healthy lifestyle and show people that even though pain is in your life it doesn’t have to become your life! Any ways sorry about the rant I really just wanted to update you on my progress. I have my CT scan coming up and hopefully that gives me answers I think its time I listen to myself become a little selfish and put ME ME ME first, YOu get to see the real side of people when you stop trying to please everyone. You cant be beautiful, happy, healthy, sexy and funny all the time its who stands there beside you when you have nothing left to give nothing to share or add to the relationship no fake smiles or nice clothes. Who is with you adding to your happiness or giving you theirs !
Thank you so so much for the support and following my posts Sending my appreciation and love to you all.
I just wanted to give an update on my health statues and what Else I have been dealing with. Since Oct When I woke up screaming in pain with intense cramping ,hot stabbing, Burning, Feeling horrible pressure like someone standing on top of me pressing my ribs inward.Followed with coughing vomiting and cold hot sweats with extreme hunger pains. It hasent left me and I struggle with this on top of everything else for 4months now. Always have a burning in between my breasts in my sternum under my rib cage. Helps to eat small meals and not have empty stomach. Stress has played a major role in my health failing and Anxiety about many things seem to intensify everything.I am extremely on edge all the time extra moody,touchy and run down, I dont sleep even more than usual my normal sleep im lucky to get a few hours now its interrupted by nightmares and hot flashes and attacks my body cant handle. My body feels it wants to give up and slowly my mind is letting go as well, I have sank into a deep depression/lack of interest and awfully angry at everyone the world. I feel bitter and sorry for myself which I allow myself to feel from time to time and have a good cry and wallow in my sorrow and unending pain.I feel jealous of everyone else able to do the things they take for granted like movies,walking and even sleep and eating. I am snappy at the world no patience as I fight daily to keep from going insane from the deep aches in my body.Just when I feel I cant take another pain,sadness,drama More come flooding in. I am unable to cope well right now and coming from the Emergency where I seem to spend my days finding out I may have an ulcer and the last time I was there the diagnosis was IBS. Which means I could have been on the right treatment long ago if the doctors just knew what they were doing. Im tired of healthcare and Im tired of being tired. I am losing it and so angry that no one sees what I go through, helps, listens,stands beside me in my fight against myself. I dont want to hear others complain oh what a long work day WHAT I would give to work,OH my feet hurt I wish I could stand long enough to have my feet hurt. Instead my body is eating a hole in my stomach Its literally eating itself! Do I hate myself that much Am I that unhappy, dissatisfied ,unloved? I am turning on the only person I have MYSELF. I cant put up with it anymore and have to deal with the tiny details of life love relationships. I am sick of being the glue that holds everything together,I am sick of being the therapist to my fiance,Teacher to him,stronger than him,leader,im sick of knowing how to act in a relationship the dos and Donts the yes and no,I am sick of saying what I want and how where when I want everyone to just know. Pick up the pieces family friends lover because Im in pieces and stop taking them and placing them in your soul give them back to me to rebuild in fact take a few broken pieces off of yourself and give them to me so I may build a better stronger me again. Gifts dont cut it being the person I need you to be does,there for me listening to me not making every min hard and struggle. Understand and put yourself in my shoes for one! Can you survive a hole in your stomach let alone endo attaching itself to every organ. Whats mine anymore My bodys my lovers ! my organs are for my endo My stomachs for my ulcer my mind is for the demons who keep me company at night and my heart is broken waiting for my prince……….
Just thought I would share someone who makes me smile on those unbearable days
I’m sitting here and in the last while a lot has happened I’m crippled in intense pain my back is out slipped disk, sciatic pain back brace and crutches. I have horrible Endo pain that makes me question why I deserve this ? what did I do? I think about relationships and I wonder if its worth even having one as it takes a lot more out of me then pleasure from it! I feel as Endo women we are in a different category and handle things differently. I am a warrior I am a survivor and I shouldn’t settle for a man a boy who has not experienced life and the ups and downs and come out the other side as a warrior. I think all Endo women need warriors because we are so strong so independent so powerful and I feel if we don’t have that in a mate then we are being held back. I feel in the ups and downs and chronic pain of endo we are constantly in a fight for ourselves state and we are busy trying to get through the day never mind helping our mates reach there potential I feel that being with the wrong person poisons us even more and clouds us from ourselves. We need to be put first and our emotions cared for by someone who knows pain experienced suffering can relate even a little bit. I know men are different have different needs desires but if you are made to feel less than if you are uncomfortable with sex and you are in pain we shouldn’t be made to feel we must please our men and cope and shut up about the pain. We shouldn’t be made to feel less than when he needs porn to “get off” We shouldn’t be put into situations that make us hate ourselves more and hate our bodies more than we already do. Our mates shouldn’t remind us of the Cants but should be there pushing us with the You Can! We are not mans teacher, pleaser, therapist, mother, we cannot be made to stand by while a man learns his way around life as we can barely live it. we cannot be punching bags for a mans ego or sex drive and be made to suffer when we cant fulfill his ever need. Why must women suffer in silence and cry in the dark ? Why is it up to us as women to take care of men in every way and learn to except and put up with? Why is it up to us to dress sexy, look good, diet ,be good in bed, pleasure and please, dress in sexy maid outfits, call our men “Daddy” and make him feel all sexy without any work? Why is it up to a women to keep her man interested by changing her appearance to not get boring and keep the firing burning>? A guy just shows up and boom expects us to be hot and ready for them. Who are they kidding! We do all the work so much work and then we make excuses for them when they hurt us or don’t act accordingly. I want a man who is strong who stands on his own two feet ! who cares for himself and takes pride in himself. I want a man who puts me first who doesn’t use excuses or rebels against me like I’m the enemy. I want a guy who looks after himself and me. I want to feel safe and warm with his arms around me not feel like he is horny. I want to feel loved and Romantic I want to feel I am the only girl in the world never competing with other unrealistic internet girls. I want to be good enough in every aspect. I want to be his best friend, soul mate confidant. I want to be his world he mine. I guess its too much to ask and maybe to good to be true. I cant handle anymore disappointment my body gives me that daily, I want security, a romantic fairy tale love story. I deserve it WE deserve it Don’t settle for someone selfish set in his ways unable to see your pain or know what true pain is! Don’t settle for someone inside there own head they don’t see you suffer alone, Don’t settle for someone who only cares about things that only directly effect him, Don’t settle for someone who is board and pressures you for sex and when you don’t give it Jerks off to porn. Don’t settle ladies we were born with Endometriosis something we sadly are stuck with we are not stuck with a crappy man. Take control of the one thing which is our relationships and only let the right people into your world because it isn’t like any other life out there its your own personal journey. Take pride in your steps walk with your head up and know you deserve the world! Go out and Get it ! xoxoxox
This article was written in response to a request for material to share with family and care providers around mental health issues in women iwth endometrisosis. It contains some ideas I have coalesced over the years. If it is not appropriate here, feel free to remove it, but if you like it can be shared. Nancy Petersen
Psycho-Social Issues for Women with Endometriosis
By Nancy Petersen, RN Retired
Past Director, St. Charles Endometriosis Treatment Program
In the early 1920’s Sampson and others told us that women with endometriosis were infertile and that the primary pain symptom was dysmenorrhea. It was further asserted that the most frequently involved areas were the ovaries, and that the lesions were black, and/or brown. The original concepts further told us that pregnancy, menopause, or surgical castration would affect a cure. On these basic concepts all modern therapies have been based, including drug therapies suppressing ovarian function, none of which works or is true as we know the disease today.
What is happening to women around the world for women with endometriosis, is that large numbers who fail to fit the original paradigm are undergoing psychological dismissal. This dismissal is very damaging in that they become isolated from their families, partners and the health care system. This dismissal is reported by Kate Weinstein in her book, Living with Endometriosis, to be as high as 75 %. My tracking of patients experiences when managing the Endometriosis Treatment Program at St Charles Medical Center in Bend Oregon (now closed) matched Kate Weinstein’s data exactly. Yet literally all of our patients at that time, had biopsy proven, active, painful disease despite multiple treatment failures. Sadly, this disconnect between their health and our understanding of it continues today, as evidenced by the thousands of women with active disease that I interact with weekly.
Since medical therapy does not eradicate the disease, and since laser vaporization and electrocautery have been shown to be ineffective as well, most patients with endometriosis are at risk for ineffective therapy. Patients sought excision of their disease, from around the world when multiple attempts at treatment had resulted in failure. Their stories illustrate that their dismissal is real, and can come from female as well as from male physicians.
They report being referred for counseling, psychiatric care, blatantly called neurotic, or just being ignored since they have not responded to treatment, treatment known not to work but widely used. As those around them begin to see the dichotomy between what the health care provider believes and what the patient is experiencing, considerable confusion develops. This dismissal occurred despite evidence of peritoneal signs and symptoms (acute abdominal pain, bloating, nausea, pallor, restlessness, pain with sex, rebound tenderness, faintness, low grade fevers and painful pelvic exams). That 75% of women with endometriosis are being dismissed as neurotic, would in fact generate some depression, hopelessness, and despair, simply from the level of pain, let alone the isolation, inability to conceive, inability to participate fully in life as a sexual, creative being. In women with endometriosis, doctors are somehow able to excuse the presence of such symptoms and their denial grows more profound once the woman has been castrated for treatment.
There is support in the literature for significant endometriosis persisting after castration. Dr. David Redwine published a series of 72 cases in the 1980’s of persistent endometriosis, some as long as 22 yrs post castration with no estrogen replacement. These cases responded dramatically to excision of their disease, confirmed by board certified pathologists. And the patients were able to return to life as active, creative, sexual, child bearing (in many cases) individuals. Since that time others have published the presence of active painful endometriosis post castration.
Too often there is abandonment of the patient by her crucial support system and she grows more and more isolated. The degree of isolation and frustration is proportioned to the degree of failed treatment received. It could be seen that if a woman does not get the treatment she requires then she feels isolated and frustrated. The more treatment a woman receives the more she begins to realize that this disease is not going to get better so this could deepen the sense of frustration, depression, hopelessness, despair, and isolation as the family/support system backs away.. (catch 22)……… Families tend to put too much emphasis on what the doctor says, and when the doctor has missed the issues, and blames the patient for her condition, quickly families, spouses and friends will as well. It becomes a deep pit which no amount of counseling can remediate unless the peritoneal quality pain is alleviated.
The impact on their relationships and the quality of their lives may lack appreciation in the healthcare arena. This disconnect is huge. But when we don’t know the answer, blaming the patient is inexcusable. What women with endometriosis need, is respect for their journey, skilled surgery, compassionate care, referral for pelvic floor therapy by certified women’s health PT’s, If we cannot do the surgery, perhaps referring the patient to those with advanced skills would be the next step.
If 175 million men worldwide, suffered unbearable pain during sex, bowel movements, and exercise, and were offered feminizing hormones, pregnancy or surgical castration as treatment, our attitudes would be quite different.
Women with endometriosis struggle with life altering pain, less than supportive attitudes by far too many healthcare providers, try to maintain relationships, family and career’s, and they deserve our support and respect, not our psychological dismissal.
Until there is widespread agreement on the nature of this disease, the best outcome based therapies, and more follow up studies to support all that we do for women with endometriosis, the least we can do is to have compassion for their pain, offer relief from it, or refer the patient to someone who can care for her whether it be surgical excision, pelvic physical therapy, or pain management. To deny a patient with peritoneal quality pain, relief, is to say the least, unacceptable. Endometriosis may not be a terminal disease. But despair can be.
Nancy Petersen RN Retired