Friday, January 13, 2012
and again and again! This seems to be the way that my life has turned out, or so it seems when it comes to my life with endometriosis and PCOS.
After my last surgery didn't go so well, my gyno threw her hands up in the air and said she didn't know what else to do for me. At first she just told me to get married and get pregnant, my reaction "Why didn't I think of that!" Seriously? I know that she's probably not nearly as frustrated as I am, but sarcasm is not necessarily the best option to have at a time like this. She told me that she thought that the endo had spread to my uterus muscle, and if this was the case, there was nothing more she would be able to do. The only thing she could do, try to help keep the periods at bay, which at this point, she's not doing a very good job at! That new birth control she swore on isn't working like I was hoping, I swear I have had more cycles on that than I did before I got on it! Right now I'm really thinking about having it taken out, the only thing stopping me, the $600 price tag that came with the medicine. She gave me the option of seeing a fertility doctor who specializes in endo or sending me to a pain management doctor, the latter which is not an option because I simply refuse to live my life on pain pills (to many addicts in my family).
Well it took a few weeks to get the call that the appointment was scheduled but it finally came. I have to say something before I continue, before the appointment was set and I was told that I was going to see a specialist I had a very long conversation with my grandmother. At this point she is very much against me ever having kids, she constantly repeats that kids are so much to deal with, your life isn't yours anymore and that if she had it to do over again, she wouldn't have any. She is not someone that is very easy to talk to at times, although at this point in my life, I don't have many options. Anyways, during this conversation I told her that I knew I was going to be having another surgery this year and that I didn't know if I was ready for it. I also told her that I wasn't sure if I felt comfortable going to see a fertility doctor just yet, there is just a feeling of despair when I think about having to go to a fertility doctor. I have been preparing for this for roughly 5 years now, or so I thought. You can think about what the impact of walking into a fertility clinic will be like all you want, but until you walk through those doors, you have no idea. Knowing a little bit about what my sister just went through in regards to IVF, I was scared shitless to go into this place, to make it worse, I was going in alone (which also seems to be the way my life works). Knowing that it is so easy for some people to have children and knowing that half of those people either don't take care of them like they should or just don't give a damn is absolutely heartbreaking for someone like me. I know that when my cousin told me she was having an abortion, I was pissed beyond belief. I didn't understand how someone could do that to a baby! I still don't get it and I still don't believe in it. Anyways, I'm getting sidetracked.....
The doctor sat me down in his office and really talked to me. This is a first that I have ever experienced and I'm highly impressed, note that we are 5 minutes into the appointment! He asks the general questions, why I'm here, what I hope to achieve, where is the pain, how bad are your cycles, etc. etc. Wait, did he just ask me where my pain is? I do believe he did. Not one doctor has ever asked me where my pain is at, they all just assume that I have the same pain that most other people do and don't investigate any further. I think I have just found the best doctor in the world!! Note that we are 10 minutes into the appointment! So I tell him where my pain is and the reaction he has is absolutely amazing. He nods his head and says "That explains a lot", well for me it didn't but he did finally explain it all later in the visit. The round of general questions goes on and he decides that all he is going to do during the first visit is an exam, to which I'm mentally begging not to have, they are extremely painful and I go through this every few months or so, happens way more often than I would like. Exam time, oh boy! Yes the exam was once again extremely painful and there was a point that I thought I would just kick him in the head for making the pain that much worse, I mean my foot was right there in the vicinity of his head after all. Back to the office for more talking and he immediately tells me that I need to have another surgery, oh the joys of being right. He explains that there are nerve endings that are in my cervix and that since my cervix is so severely jacked up that the nerve endings need to be burned off. He is about 99% positive that if those nerve endings are burned, than my pain will cease to exist. Could I be hearing him right? Could I finally get through a month without having to take pain pills? Could I have a cycle without wishing that I would just die and get it over with (not being dramatic, thats how bad the pain is sometimes)? Holy crap, this is music to my ears!! Now I'm fully aware that this requires surgery, of which I am in no way ready for, either financially or mentally, but I have to try something. Living this way since I got my period at 13 has been hell. My entire reproductive system tortures me on a monthly basis and I am just sick and tired of it. He also talked about my acne, my weight problem and some other things that I have issues with, all of which he is hoping that he might be able to correct with the right medication. See the PCOS causes a lot of problems for women, and I seem to have most of them right now! I have to have a bunch of blood tests run and I go back to him in a little over a week to get my results and to have an ultrasound.
So after some consideration, I have decided that the best option for me at this point is to have another surgery and pray to God that this helps with something. At this point there is nothing else for me to do but hope and pray that the pain is minimal before my surgery time comes around. If I was ready for it, I would have my surgery the next available date, but I'm just not ready for it. I still have a long road to go that hopefully ends with a child being born, hopefully my child, but who knows, God may have another direction for my life and I may just not have been informed yet. Until that day comes, I'll stay on the path I was given, try my hardest to not let the bad days get to me and just keep on going, and hopefully I can do it with a smile, even on the days that I'm wanting to rip my ovaries out!
January 29, 2012
The endo doctor sent me for some blood work and let me tell you, I got very sick that day, taking that medicine was icky and it didn't settle well with my stomach! I went back to the doctor this past Monday and got the results of my tests. The one that I was mainly worried about was the one that he waited till the end of my visit to actually tell me! Needless to say, I was a nervous wreck the entire visit. My AMH level is at a 1.3, the response from my doctor was its normal, the response from my sister, yucky! So at this point, I still am not sure what the hell the 1.3 means! The other thing I was worried about was my insulin test which came back showing that I was insulin resistant. So from what my doctor says, my body produces to much insulin and my ovaries are not allowing my body to function properly, its something that is very common in people with PCOS. Now I'm on some medicine to help regulate my insulin and he is also hoping that it will help with my weight problem. I've read many articles stating that PCOS causes obesity. I'm not saying its all from the PCOS, I mean lets face it, it runs in the family and I haven't been as active since I got out of school, even though in school I was always on the bigger side. For the most part I was always happy with the way I looked, really didn't bother me so much that I was bigger, but lately, its really started bothering me. I think it could be the fact that I'm getting older, my clock is ticking very loudly and the fact that I'm permanently single! Regardless of the fact, I have started working out more and I'm eating a lot better than I was. Only time will tell if the medicine and everything else levels my body out, but I can say that since my first doctor appointment and yesterday morning, my scale is down 10 pounds, although I can't really tell a difference in my clothes yet, but I have had a few people say that I look like I'm losing some weight.
March 5, 2012
So the endo specialist told me that I could have this surgery and it would take the pain away and that my life would be so much better, I was so excited about this and really thought that this was the way to go, however, I realized that the doctor was an ass. I was denied coverage from the insurance company because they still consider the surgery to be an experimental procedure, so it was going to cost me over $3000 to have this surgery done. The insurance company did say that I could appeal the decision and have the doctor write a letter stating why the surgery was medically needed. So I brought this up to the nurse when she called and she said that she would ask the doctor and get back to me. Well when she called me she told me that the doctor informed her it was a waste of his time to write a letter because he didn't think that it was going to make a difference. Big problem there. A doctor shouldn't ever tell his patient that their issue is a waste of their time, that doesn't fly. So I told the nurse that it was a waste of my time to continue seeing him as a doctor if that was going to be his attitude. I made an appointment for my original doctor to see what she said. She's going to get all the info from the specialist and then let me know what she thinks. Her decision regarding the surgery will help make my decision about the surgery that much easier.
March 19, 2012
So I have decided that I'm not having the surgery to burn the nerve endings in my cervix. I went and saw my original doctor again and she called me about a week after we talked and she told me that the surgery was still experimental and that there are way too many things that could go wrong for it to be considered successful. She has said that I probably need to see a urologist and that if I wanted to see another fertility doctor then I would need to go to OKC since I have seen the 2 top doctors in Tulsa and don't like them. At this point, I'm giving up fighting. I'm tired of trying everything under the sun and tired of going to the doctor all the time. I've decided that I'm just going to let everything go for now and I'm going to see how long I can go with the pain and then I'll make my decision regarding the hysterectomy. I don't see myself getting married or settling down anytime soon and I'm in no way shape or form ready to have a child right now. I don't want to make a decision right now that will affect the rest of my life without thinking everything through. I've prayed for some insight and a direction to go so at this point its just me sitting here waiting on a sign. Nanny told me years ago that she thought I would have kids in my life but that she didn't believe that they would be mine. She sees me as a stepmother or such. I know that there are other options out there for me so its just a waiting game at this point. However, I'm not going to live with this much pain for very much longer. At some point you have to stop and think about the quality of your life.
