Dealing with Endometriosis, PCOS, Adenomyosis, low ovarian reserve, and a hostile uterus. Struggling to maintain a normal life while taking this journey. Putting my trust in God and hoping my writing can help others in similar positions.
Time is passing, as it always does. I'm suppose to be healing and moving on, but I'm stuck. Physically I'm still nowhere near where I want to be. I know it's suppose to take time, but I'm sick of being stuck in this place. Most of the year, really 2 years, I've spent mostly on bed rest or some sort of modified bed rest. My life has been on hold. Waiting to see if we would have success or not with this journey to having a bio child. Now after 6 losses, and after many ER visits, and dangers we are done with this journey and I don't know what my life is anymore. I don't know what to do or where to go. I don't know how to move on. I'm not sure I'm ready to move on.
I feel an anger I've never felt before. I've always had sadness mixed with the pregnancy announcements of friends, but now it's turned to anger, especially if they are complainers. I fight the urge to slap them and yell at them to shut up and just be grateful. I hate being that way. I don't want it to effect any of my friendships. I'm hoping this is something that will just pass.
I've felt sad and angry because I can't even talk to my friends. I know I could find a support group or a counselor and talk with them, and that would be helpful, but it frustrates me that I can't talk with my friends about what I'm feeling or thinking. If I were to truly open up and say what I thought or felt it would end in disaster. My friends would have no understanding and would just find me to be a bitter jerk.
I do have to say that through all this I have fallen in love all over again with my husband. He is so amazing and so supportive. Last night I became overwhelmed with love and gratitude for him. When we started dating I told him what a life with me might mean. He knew I had endo and would end up with many "lazy" days. He knew I would not be able to conceive without medical intervention, and even with the help it might not be possible. We even knew that my chances of being able to carry full term were low, yet he still choose to love me and to marry me. We have been tested and we know that my body is the failure, so being with somebody else could easily give him a bio child, yet he stays with me with no bitterness. He is supportive and he loves me all the same. I don't know how I got so blessed to have a love like his, but I am so thankful.
I know that wither I am stuck or moving forward I will always have his love and together we will get through this.
I'm not sure why I've been putting off updating and letting you all know that my surgery date has been set. There is no real reason. The only thing is that I've been busy trying to clean house, get ready for a garage sale, get frozen dinner prepared for recovery, and rest because I've been exhausted. The garage sale won't be happening until after my surgery, but I need to be ready for it, and won't be able to do much.
My surgery date is July 20! Friday the 13 is my pre-op. Not sure if I should be worried or superstitious about that day, but for now I'll hope it means good things to come. My husband has take the 20-29 off of work. I'm really glad he will be around for everything, to help during recovery as well.
I'm trying to get a lot of things done before my surgery to make it easy for him. This is his only vacation this year, and he's spending it taking care of me. I want to make it as easy for him as possible so I've set goals. My goal is to deep clean the house completely, to have everything that we sale at his parent's garage sale set aside, and to have easy meals he can pull out of the freezer and set in the oven or cock pot and not have the think.
It's funny. I've had some friends tell me to make him do the cooking, but he only BBQ's, so I don't think I want learning while I'm on almost bed rest, and like I said, this is his vacation time. We've even played around with the idea of going to the beach for a night, or up to our old camp for a few days. We've been wanting to go, my husband has really wanted to go volunteer some time, but we know we were going to have a surgery to work around, and my brother from Seattle is planning to come with his 3 kids, so his vacation time has had to be worked around them. We are not sure, because we don't know how I'll feel. My husband thinks I won't be up to, but I think I'll be fine. If we go up there, I won't have to cook. My in-laws will take care of my dog. All I need to be able to do is walk, which should be able to do, even if it's slowly. I may just have to take an hour to walk to a meal, instead of 10 minutes, but I'll take that. It would be nice little getaway for us, and this may be our only chance. My brother is coming in august, and hub's will not have a lot of vacation time left, so the days he takes off will be like a Friday and/or Monday with a weekend in between to utilize the time well. I'm looking forward to my brother coming. I only see him about once a year (which is more than my other two, which is never) and the last time I saw his kids he only had the oldest twins, who were about 14 months, and didn't have his youngest girl. He will also be bringing his girlfriend, who I only had a short meal with once, so I'm looking forward to getting to know the girl who has helped him to love again after the lies and hurt his ex-wife put him through.
I've been busy in this yuck heat trying to get everything ready. My meals has been pretty easy. When I cook dinner, I know just double everything, and easy have leftovers to freeze. As I dish them up to be frozen, I write out the directions for cooking and put them on the dish for easy reference. It should be fool proof (knock on wood!) Now that my pre-op is not too far away I've started to get a little jittery feeling. I just need to keep distracting myself. The date is set!
This was a long weekend. My sis-in-law got married! We had to run around and decorate and celebrate. It was a beautiful wedding and I'm honored to have been apart of it. I was actually looking forward to the weekend. I had stopped bleeding and I just love weddings. They make me giddy!
Friday we spent the day setting up the hall. It looked fabulous! Sadly by that evening for the rehearsal I had already started bleeding and cramping again. I still managed to smile and have fun. I really did enjoy the wedding, but sadly it was also shadowed by my bleeding and pain. I tried to ignore it since I knew I had to go to the doctor on Monday. It kind of worked. Here's a look at my weekend!
The tall clear center pieces had flowers added on the day of the wedding as you can see below
Monday was my doctor appointment and I was really starting to get nervous. My cramping keeps getting worse, and a new bruise like feeling on my ovaries has started. I just don't want to face what it means, and I also just didn't want to face the reality that we may never get another chance to try for a biological child. I'm just not sure how to be okay with never getting to have one.
I had a good conversation with Dr. S. He explained that at this point we have been able to work out my bad quality egg and lack of ovulation problems. We've managed to find a way to get pregnant, but my hostile uterus has been unable to handle it. It flips out and kills off whatever is in there. It was a bit hard to hear that if it my uterus just rejected this baby for no good reason. It was perfectly healthy. From all the test I should have been able to deliver a perfectly healthy baby.
After this was discussed he went on to say he was at a loss of what to do, but I cut him off and explained not only when I've become pregnant, but all the time, my bleeding has become more and my pain from my endo is worse. I feel worse than I did before my last surgery. I had at first always kind of said that next time I have a surgery I will just do a hysterectomy, but wasn't sure I really want that now. Dr. S said that he also thought this time it was a good idea to pursue another lap. He want to remove all my adhesion and scar tissue and give it one more try with a freshly cleaned out uterus. He said that he can't promise cleaning me out will fix anything, but he will be able to take a better look at my uterus and to see just how much damage has been done to it. That way we know if we have a chance.
He is concerned about time, and didn't want to waste anytime setting up my surgery. I would probably be going in next week for it, but he has a vacation planned, so he is going to plan it at the hospitals first opening after he gets back, which puts us the week of July 23. I'm not sure of the exact date yet, but should be getting a call within the next few days, once the nurses and staff have worked out the insurance and booking the hospital.
I feel good about this choice. I'm scared too much time is still going to pass and we are going to miss our chance, but at least I'll be feeling a bit better. I feel good that Dr. S was 100% on board with this choice as well and that he plans a minimum of a four hour surgery because he wants to spend a lot of time looking around and doesn't want to miss anything. Once we get the date set up, we will have to discuss a lot of things, like giving permission to remove a tube or ovary if needed, or even worse a hysterectomy. I know when we get to that part my nerves will set in. For now I wait and find peace in knowing that we are choosing the best option for us.
I met with a dear friend on Monday who is dealing with some pretty intense issues in her marriage. I feel so badly for her, but I do have to say, it has made me appreciate my husband that much more. I've really been struggling accepting how God can ever use what we have been through for good, and I still am, but I do have to say that through all this my husband and I have drawn closer. I hate that my friend is dealing with facing a reality that she is in a loveless marriage, but I have awoken to the fact that despite out situation and our losses we have each other. I know it's sappy, but it's true. I have fallen in love all over again, and I know that we will always pull through whatever life throws at us together.
Today's blood test came in, and beta is at 2. This is a good thing. It means my mtx. shot has done it's job,or my body has, or whatever the hell it was, it's done. I'm no longer pregnant is what it means. It means that baby number 4 is no longer with me.
It means that my slowed bleeding should end soon. It means that now I can grieve for the lost child. I've been feeling so strange with this loss. It's been hard to process it. It never felt real. I barely had a moment to enjoy being pregnant. From day one things looked like they were falling apart. I couldn't allow myself a moment of grief because I had to take care of myself physically. Thanks to my blood loss and the mtx. shot, I still feel shitty. I'm dizzy, I'm nauseated, and I"m in pain. The danger is gone.
The danger is gone; meaning, I'm allowed to feel for the loss. When I received that call, I was hoping to hear that my beta had dropped significantly. I was hoping for it, but I had not braced myself for it. It was amazing how quickly that pain and sorrow entered my heart at those words. The tears have not stopped falling since that call, yet I feel better than I have in days. I needed closure. I needed to feel this loss, I needed to grieve.
It's in my grief that I'm reminded of how amazing my husband is. It's in my grief that I remember I do have a God that loves me. I don't know how, but I do know I'll be okay because of those two facts. I'm broken. I'm angry. I'm hurting. I'm incomplete, but I'll be okay. It's been a long time since I have felt this way. I can't say I believe that I will ever get to hold a child in my womb and my arms, but I'll be okay.
Things have sure not gone as planned this loss, not that a loss is ever planned. My bleeding became really bad on Monday. I called up Dr. S and was told to go straight to the hospital. They tested my blood and did an ultrasound. My uterus was full of blood. Then my beta came back and showed barely any drop. This was scary, it meant so many possibilities and another ectopic. I was also showing very low iron from blood loss and borderline severely dehydrated.
I was hooked to IV and told I must stay overnight. Thanks to a low white blood count and my history I was not allowed any visitors, including my husband for fear of infection. The next day my levels were tested again. They wanted to get my iron and electrolytes back up before testing my beta again. They wanted by blood to be better to give a more accurate beta result. They decided blood level was good and took my beta, which was still hovering in the same area. This meant they were almost positive it was an ectopic. My bleeding had decreased and so I was given the shot of mtx and sent home to let the rest of this nightmare play out.
Just as we were pulling up in front of our home I got a phone call, apparently Dr. S had ordered the hospital to do another u/s and to take a tissue sample. He wanted to know if I was losing pregnancy tissue, or if it was endo/adeno tissue. I was suppose to have this before my shot. He wanted to know where it was and he wanted to know if my bleeding truly was less. The ultrasound sound showed significant amount of blood in my uterus. Which means the bloating was not lingering effects of OHSS, but from too much blood. While waiting on tissue testing Dr. S ordered a MVA. My dr. is two hours away, and what I didn't know was that he was on his way to my hospital. When I walked into the room for my procedure I was so surprised to see him there. It was a small bit of joy in this dark time. He was concerned about all the blood and wanted to see for himself what was going on after it was cleaned out.
I was not looking forward to this MVA, Dr. S was even nervous, he couldn't hid it. Every time I've had a D&C or MVA it's agitated my adeno and caused it to burrow even deeper into my uterus walls. It was so painful, and hurt so badly. It was like my whole body wanted to fight this procedure. It felt like my whole body was being sucked up. My head started pounding, my feet even being to tighten, but in a matter of seconds it was over. Then the ultrasound to show what had happened. My uterus still had a lot of blood, but not dangerous levels, and my Dr watched it to see if I was adding more rapidly. It seemed to be doing better, so I was allowed to dress.
During this time my results from my tissue samples were done. There was still some pregnancy tissue in there. Dr sent me home though, he felt safe that we had gotten all we could for now without making things worse. He's pretty positive that my ectopic had embedded into my uterus walls, but that the shot and the MVA would be enough to clear it out.
I took another beta today, but today's results may still be weird. I'll do at least one more and if the numbers are falling we can assume it's finally ending. Dr. S was explaining everything to me, from the ectopic, to the massive bleeding from adeno tearing up my uterus. I stopped him and asked him if this was all just a dream, it sounded unreal. He gave that sympathetic smile and patted my back and told me it would be over soon, we can talk more than.
Now I'm home, resting and unsure of what to feel. I'm just hoping, when hope seems impossible, that it's finally all done.
I apologize for not updating yesterday. I was no in the best of place, which I guess lets you know the outcome.
I went in that morning to the lab to have my blood drawn, but I felt it was useless. After a restless 4 hours of sleep I woke to horrible cramping, and yep, a ton of red blood. My lab was pretty full, but I found a place to sit with a few empty seats around it. I really didn't want to be caught up in some superficial conversations. While I sat there 3 preggo bellies passed in front of me on their way for glucose testing. Then just 2 seats down another one is talking on the phone about how they just had their drink and now have to sit and wait an hour before they can get their drink. She went on and on about how frustrated she was. She said she was tired of that thing controlling her. Ugh! Really? I'll take it. I'll turn my whole world upside down for the chance, oh wait, I've done that already.
I was begging for my named to be called at any moment. I was struggling to not jump up and punch that women in the face. I just wanted to knock some sense into her. How can you not imagine the miracle you are holding there. How can you not love it so much, that an hour long glucose test is totally worth it? Then while I'm slightly begging for my name to be called next, and a women and her niece sit next to me. Low and behold the women is pregnant. While sitting there the reception walks to us, hand the women her drink for the test and then ask me to confirms my number. The young women overheard this conversation and asks me which flavor drink I choose? What the crap? She asked for my number, not for choice of flavor. Before I have a chance to answer she is asking me how far along I am and going on about how she still has morning sickness and she's so tired of it. I know my OHSS made me hugely bloated, plus, well I am fat, but really? Thankfully, at the moment I was attempting to figure out what to say, my name was called and it was time to get up.
The lab tech I had was great. She saw that it was a pregnancy test, but knew enough about where the order was coming from to be careful what she said. She asked about my blood, and I explained, and I saw that look at her face. She knew as well what was happening. She found my vein easily, despite being slightly dehydrated and quickly got what she needed. She bandaged my arm and said I would know by 3, and she would try to push it faster, but couldn't promise anything.
For the rest of the day, each time the phone rang my stomach knots grew. Finally I had the call I was dreading waiting for. Beta was at 21. I should have been closer to 50. I always had had those faint lines, and it was explained that meant that at a minimum I would have been at 25. They asked about my bleeding and how my OHSS was doing, and it all came down to the fact that I'm miscarrying our 4th child. I'll go back for one more Beta to just make sure it is not an ectopic, but it everything points to miscarriage.
That evening when my husband came home, I didn't have to say much. He asked if I got the result and I just looked at him, and he knew. It's the first time I've seen a look of hopeless cross his face, and I hope I never have to see that again. He was supportive, he hugged and we spent the evening talking, watching Lost and just being together. This situation sucks. I hate that I'm there again. My faith in God is being shaken like never before, but the one thing I do know. I have an amazing husband. He is so much more than I deserve, and no matter what happens I know together we will make it.
