His and Her Health

hi guys, me again. Ok, I am very tired of all the doctor telling me what to do, almost like it is not up to me, this team of doctor doing what I am supposed to to have them all decide when I am 'fit" to be a mom again, this is a joke, I am the best mom out there, the only credit I give myself, chronic pain and problems, yes, but the cruelty of the fathers, when I am the mom who has been full time, this whole process of CPS coming into your life, not knowing you for more than five minutes yet they can take over your entire life, it is just wrong, my ex who was barely there for years as I did it all as he dated for years until he met his young scottsdale barbie doll, and the babies father, whoe never wanted a child, a womanizer and casanova, who put us all through hell, I had the highest risk pregnancy and we made it, yet they have the kids as i am too ill to fight, I NEED HELP TO GET BETTER. So, now, it is up to my primary, who has a team of doctors all deciding my life, it is just wrong. Anyhow, the ob says that I will have Lupron Depot, after the other specialist does the Botox, and if the botox does not work, I am truly terrified, the pain is that high at times, it is terror, so they have to work, and if they do, then the next step is her requiring me to do The Lupron Depot. I have read about it, I am scared, my father and I both agree, I have had 20 laps for endo, and I do realize that the endo can spread anywhere, when i went to UCLA to the best uro in the world, he took out a mass of endo in my urethra, you can imagine the pain I had for that year knowing this was not just IC, but he took care of it. So, I know they will never approve a hysterectomy on the size of me (medically, nobody want to be responsible for invasive procedures, I can tell with the doctor involved, there is so much at stake here, so I do feel these doctor are not helping me the best they could be, why my father feels if we went out of state, long story, but maybe that is the answer) but as for Lupron Depot, and My IC doctor says I have IC the most severe in his office of many. I know many people say that Lupron Depot will make the cystitis worse, and there can be no 'worse" with me, I lay bed ridden in pain so much of the time, and I am not kidding you, I have had natural child birth, what I have is over that at many times. Lupron Depot puts you into menopause, and it is a several month procedure, as they take care of your estrogen as 'add feedback, etc" but it can cause irreversable joint main for life, IT CAUSE BLADDER SPASMS, which I spend my entire day doing all I can to keep the spasms down, I am scared, again, told what I am to do, so does anybody know about it, and with my condition, do you think it will be ok, or something I should worry about as my gut instinct has been no, but yet I have had periods that will not stop, and not only are they heavy, they used to be regular for me, about four days, now they are for a week with clots and not normal, and I know I have not had any endo removed for years now, I am sure it has traveled and Lupron is supposed to kill it, but you truly go through menopause and the side effect are bad, and I dont know what to do, do I just do like the Botox (DESPERATE FOR RELIEF, THE BOTOX HAS TO HELP FIRST) then do I just give in and listen to her that the Lupron is what she is saying is next? If I don't, then I will have my PC saying that I am not abiding by what the doctor are wanting me to do, hurting me with getting my children back, and yet, I listened to them all, did two month of PT, and now my back used to just have the disc bulges in one local region, now my entire back is ruined, and I new it going into it, I would come home and tremble on the floor, even the PT said it was not for me, but yet, I have to do this next. Has anyone done Lupron, does it sound appopriate for Severe Cystitis patients? Anyhow, Until the botox on wednesday morning, I will not relax, as that is the number one priority, that is what I need help with most, my rectum goes from scorching fire, to something quiverring in there, to a sick nerve feeling, to stabbling pains, and that is the only thing I care a bout right now. But, I am alone, me and my father who is old, in NJ, supporting us, yet I have nobody, I canot have friend as my life is constricted to when the hours are ok, like right now, or up to a ten, and then I cannot even talk, it gets so high. I just need support, and help and I am lost, I need to get better, but noting can go worse at this point. I just have to believe the Botox will help, I just wonder if he will get it into the correct areas and how will he do it and I do feel it will help as long as he gets it to the right areas, I am so depsperate, scared, and alone. I always had my kids to be mom, full time mom to have a purpose in life, now this way, the judge said it was time for mommy to get well, and I never thought it would take this long, this has been since september, and I am going backwards. I a fed up, I am so tirded of it all, my worst fear is going to bed, the fear of waking up and it takes me about three hours to become normal, the process of waking up and getting my body ok takes time, the spasms go like crazy, the fibro and getting going takes me half the day, I cannot explain it, but now, my life is not just jump up and get going, it is a process of bladder function, and rectal function, getting the meds in me to start to work, by midnight you see, I am good, then to go to bed to have it all start over, I feel when I finally do sleep, my muscles must relax and then they go through the oppositie hell of waking and going to the opposite extreme, and it is like labor, it takes me hours to become to a normal state, why, it is so hard. WIll you assure me that a top pudendal neuralgia doctor (one of many in the world) will know where to insert the botox and know what to do? UI am sorry, I probably will be a wreck until wedneday morning, almost there, until I see if the Botox works, what if it doesnt, My prayer have to work for once. I cant do the rectal pain another day. It is so sad...terror! It is calm right now, i dont know what, it just decided to be, but I fear when it does go beyond a ten, it is the scaries pain I have ever felt.
thank for letting me vent.
lexy

Hi Lexy

Sorry to hear about your struggle with your health.
Are you seeing a Pudendal Neuralgia specialist for botox wednesday?
Let us know how it goes. I will keep you in my prayers

Lexy
You have a lot going on in your life that is very stressful. Have confidence in your doctor that he knows the right treatment for you. Get one thing at a time taken care of. We all fear the unknown and if you can get a second opinion on your course of treatment , do that.
We wish you the best of luck , please come back to us with an up-date .

Hi Moderator and Leatorannie, I know, one thing at a time but I am also one person doing all of this and it is frustrating that there are only so many days in the week and so much pain to do this when sitting is imposible to drive. But, I know what you are saying. thank you.
Levatorannie, yes, pudendal neuralgia doc doing botox tomorrow morning, PLEASE LET IT WORK, PLEASE! I will let you know, something has to at this point. Blessing to you both.
Love,
Lexy