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Post by chibineko717 on Nov 9, 2013 13:40:26 GMT -5
Hey everyone. I thought I'd give you an update as my condition is getting worse. My lung pain has slowly been increasing and I coughed up small amounts of blood with my last period. I saw the pulmonologist a few times, but he has no idea what to do since all my x-rays, CTs, and lung function tests look normal.
I was supposed to have an appointment with Dr. Mosbrucker yesterday, but it was cancelled since they realized that they only scheduled 15 minutes for me. Dr. M said she needed a lot more time with me based on my symptoms, so I have an appointment on the 22nd. They are also reserving Jan. 10th as a possible surgery date for me. But that can change if other surgeons are needed to help Dr. M with the surgery.
I think that I'm on the placebo for the Violet Petal study. The doctor at the clinic said she is trying to figure out the best option for me. She kind of wants me to stay on the placebo until December (my 6th month) so that I would be guaranteed the real drug in the extension study. I'm going to quit the study since Dr. M seems to be thinking of doing another surgery. My abdominal pain is getting worse too, so I think that I have to have another surgery soon.
It seems that my endo keeps spreading after each surgery and there is no end in sight. I keep having surgery every 12 to 18 months so I'm getting tired of endo preventing me from living a normal life. At least starting next year I will be on medicaid, so I do not have to keep figuring out ways to constantly pay for surgery bills.
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Emily
Full Member
Posts: 148
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Post by Emily on Nov 10, 2013 18:06:45 GMT -5
I'm sorry that you are going through this and I am sorry that I do not have advice. Please know that I will be thinking of you and if you need to talk, PM me.
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Post by nibletz on Nov 11, 2013 3:05:05 GMT -5
Hugs hun
Im sorry your going through all this hun im keeping you in my thoughts and prayers and if u need me im here x
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Post by omaklackey on Nov 11, 2013 13:11:51 GMT -5
I don't know what to say. This last surgery of mine Dr. Mos was like "well I cleaned out all the endo last time so it should be pretty clean in there..." and it was just as bad as the first time. She actually tried to change the billing code to get more money for it because it took so long to clean up the endo. I don't think you can "just live with it" though, especially not with something as serious as the endo on your lungs! I'm sorry you are facing another surgery.
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Post by chibineko717 on Nov 24, 2013 15:42:17 GMT -5
Well I had my appointment with Dr. M. I'm going in for surgery #5 Jan. 10th. She found a very large fibroid and says that is making my periods worse. We will so an MRI during my next period to see if there is a nodule on my lung. If there isn't a nodule on the lung then she said that Dr. Pai will do the surgery with her. She thinks that the endo on my diaphragm is at full thickness now and is bleeding into my lung sometimes. They will have to patch my diaphragm and I might have a chest tube put in during the surgery. I will be in the hospital about 3 or 4 days after surgery to make sure I'm breathing properly.
She also thinks that I have endo on my bowels again. My muscles are in a constant spasm and my entire right side is in pain. It hurts to breathe, walk, and bend. I asked her to look for endo on one of my nerves to my leg since I'm having hip and thigh pain. She said that she will inject more botox since that helped for a while.
She also said that if I wanted to, she would take my uterus and right ovary. Dr. M said that my endo is so deep that even though she did the pre sacral neuroectomy that my uterus is causing my entire right side to tense up. My right ovary has always given me issues so she said she is willing to take it out. I have to decide if I want the hyst/rso and I'm only 25. She said that we've tried conservative treatment for a while now, I've had 2 excision surgeries, and that my endo is very aggressive.
My endo is so horrible so I don't know what I want to do yet. I haven't really dated a lot and am still a virgin. I haven't been trying to date since the endo is always causing me problems. Plus everyone who asks me out is still in high school since I look really young.
I know this is a big decision. I don't see myself getting married anytime soon. I've been thinking that I may never have kids due to the endo. I also don't want to pass it on if I had a girl. I got my Filipino citizenship confirmed since it would make it easier for me to adopt in the future. I've always loved kids. I was a Sunday school teacher for a long time. I was also a children's gym teacher before endo.
Yesterday, I was at an event at church and collapsed. I was in a ton of pain, I could not move and was crying. My mom was going to take me to the ER, but I decided not to go. They only pump me full of drugs and don't believe me when I tell them that I have endo on my diaphragm. I didn't want to wait in the ER for hours so my mom took me home and I have been glued to a heating pad since. I knew my lung did not collapse since I finished my period a few days ago. I don't like dealing with the ER and don't want to go unless my lung collapses or I have a bowel obstruction.
I think everyone was really scared at me collapsing and screaming in pain. I think that since I have such a high pain tolerance, that every one thinks I'm fine most of the time. My mom is going to call Dr. M's office tomorrow to see if we can get surgery moved up. But I know Dr. M is booked for surgery until my date. I'm glad Dr. M saved the 10th for me when I called a few weeks ago. My last surgery I had to wait about 3 months for an OR day. So now I have to wait.
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Post by nibletz on Dec 21, 2013 16:44:04 GMT -5
Aww hugs and prayers chibi I feel like crying reading the extent of your pain n endo and all thats related my prayers are with you and I really pray the next surgery in jan goes well and actually helps you and that they dont 'have' to remove things....however if they do you can always save eggs and then when you do decide your ready for children they can use them in you or surrogate depending on what you decide and on extent of surgery but I really wosh I could help you some how hugs and prayers and kisses xxx your so strong and wow!!!! (Remember the lord is who decides and trust in him)
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Post by chibineko717 on Jan 6, 2014 21:19:15 GMT -5
I decided to have the hyst and rso. I know it is not a cure, but it is my best option for some relief. I'll be glad to not have a period. I'm also hoping that the hyst will slow the endo down since it has spread so much. I met with Dr. M and Dr. Pai. They are positive that the endo is very thick on my diaphragm and will have to resect it. I will also most likely have a bowel resection. My recovery time will take longer than last time. I will be in the hospital at least 4 days.
I'm just really mad right now since my insurance got so messed up with the new healthcare changes. The state has listed my birthday wrong so every time one of the ladies tries to enter the paperwork for the surgery, they have to use the wrong date. I've been on the phone all day and not much was accomplished. The insurance is so messed up, that I'm worried if my prescription for the prep will be ready by Thursday. I just want it to get this surgery over with.
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Post by nibletz on Jan 7, 2014 12:32:38 GMT -5
Hey chibi
wow thats such a huge decision my prayerz are with you and i really pray it helps you to where you can atleast have a better chance at a "normal" life hun i feel for you i truely
as with the insurance thats so ridiculous ughh they only care when theyre ready and i cant believe that do they not realise it could put you in a predicament
hugs hun xxx im here if you need me
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Post by princessbritain on Jan 8, 2014 12:06:17 GMT -5
Just wanted to wish you the best of luck for Friday.
It really chokes me up reading what you're going through, the decision you have made to have a hysterectomy is incredibly brave.
X
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