Post-Op Appointment and Plans

Today, was my one week Post-Op appointment.  It went pretty well if I do say so myself.  My mom went with me and sadly my husband wasn't able to go.  I got my 2 external stitches removed and my incisions are healing perfectly.  They are scabbing up and itchy which is a good thing :)

Anyways, the doctor  talked about what he saw while poking around in my abdominal and pelvic cavity most of which was in my "Surgery & Day 1 Post-Op" blog.  The cyst wasn't the only thing that the doctor saw that he was surprised to find.

I have Allen-Master's Syndrome.  Here is one way to explain what it is:
Allen-Master's Syndrome is where Endometriosis creates pockets or holes in the Peritoneum.   Peritoneum covers the inside of the body much like the skin covers the outside of the body. Peritoneum normally has the appearance of saran wrap. It is stretched over the organs resulting in a flat contour. Peritoneal pockets can be of varying depths, ranging from slight indentations to very deep narrow pockets.  In its mild form peritoneal pockets can result in minor changes in the contour of the pelvic peritoneum. On occasion this is the only appearance of Endometriosis.  So needless to say my uterus jolts around which it isn't suppose to when it wants too.  This is another reason why I have pain.  Below is a few pictures taken during surgery that shows my Allen-Master's Syndrome.

This is one of two holes in my Peritoneum. 

The other pockets in my Peritoneum.  This is the same hole in both of these pictures.

You can surgically go into the holes and start removing tissue and try to find where the Endometriosis is but you risk cutting your colon open.  We are just going to leave this issue alone.

We now have some decisions to make on where we go from here.  Here are the options:
1. Do 1 month injections of Lupron for 3 months.  Then do a Hysterasalpinogram and see if my tube is opening from the shot.  If it is opening we would do 3 more 1 month injecctions.  Then another Hysterasalpinogram.  If the tube is cleared we would try to do a cycle of IVF.  While taking the Lupron I can still do consults with Fertility Clinics and price what an IVF cycle would cost us.
2. Just jump right in head first and start planning on doing IVF with no treatment to try to fix the tube.
3. Just suppress me once again and risk the Endometriosis spreading.

We have deiced option 3 is not an option.  As much as I dread the thought of Lupron again it is one of the only ways to try to save my tube.  My doctor doesn't believe in the 3 month injection at one time like I had before.  He says he ha better success rates with the 1 month injections.  Also with 1 month injections if I start going crazy I don't have to have anymore injections.  I would go on Add-Back therapy medicine as well and he WILL monitor me closely unlike the last doctor.

As of right now since IVF is so expensive we are going with option 1 and doing the Lupron to start with.  I actually trust this doctor and think he will actually do all the test he is supposed too while on it.  I am scared of the shot but I have to try to save my tube.  While receiving the shots I will see doctors at multiple Fertility Clinics around Connecticut and possibly at Bethesda and Norfolk.  My doctor says I am a perfect candidate for IVF at this time.  Given my age, my uterus is okay, my ovary looks good and the tissue that is on m ovary that I need looks beautiful(his words not mine) I should do it. 

I never thought I would have to deal with all of this at such a young age or at any age.  This is so stressful, annoying, and heartbreaking all at the same time.  It's like can we get a break please??

Over the past 2 years my father-in-law has been battling cancer and it is a miracle and a blessing he is still here with us.  Over these 2 years he has showed me not to give up, stay strong and keep fighting.  I probably would of given up by now if he wasn't such a positive and inspirational influence in our lives.  I will admit that some days I honestly just want to give up and breakdown.  It hurts so bad physically, mentally, emotionally, and spiritually.  At the end of the day I think about my father-in-law and know that if he can push on while fighting cancer I can push on with my battle against Endometriosis and Infertility.  I know God has a plan for us and I hope it includes having our own family no matter how it happens.

I absolutely love Jo Dee Messina's song "Bring On the Rain"  I believe it fits my situation quite well.
These are my favorite lyrics from the song:

It's almost like the hard times circle 'round, A couple drops and they all start comin' down.
Yeah, I might feel defeated, I might hang my head,  I might be barely breathing, but I'm not dead. 

No, cause tomorrow's another day,  and I'm thirsty anyway, 

So bring on the rain!!!!!

Also, please say a prayer for those families that lost loved ones in the shooting that took place at Sandy Hook Elementary School today.  The families need our prayers and positive thoughts more than ever!  


Until next time...

Day 3 Post-Op

The past 3 days have been pretty good.  I have had my moments of pain, and discomfort.  I have only taken 3.5 Percocet's since Friday, which is great.  This recovery has been so much easier than the last two surgeries.

I took my bandages off yesterday.  My incisions look great even though they are a tad bit red.  Today, they have been itchy which is a good sign :)  I think my doctor did a excellent job with my incisions.  They are clean and neat.  My last surgeries incisions were not clean and all over the place.  My poor belly button :(

Belly button incision.  The scar you can see on the lower bottom of m belly button is from last years surgery.  The lighting isn't the greatest and it is not as red as it looks.

Lower abdomen incision.  It looks red but most of that is due to the lighting. 

Overall everything is going quite well.  I can't wait to go to my Post-Op and discuss what options we have and what can be done to save my poor little tube.  Even after my incisions heal it will still take my body months to fully recover from this surgery.  I finally had relief of all the gas in my shoulders.  It is great to be able to lay down and not have stabbing pains in my chest and shoulders anymore.  The stomach swelling has definitely gone down over the past few days.  Obviously, I am still a little puffy.  I look forward to being able to go to the bathroom or cough without having to hold a pillow or towel to my stomach to help with pain and so I don't pop a stitch :P

I got a call today for my Primary Doctor who told me that my thyroid was finally in an appropriate normal range.  However, since it has been all over the charts mainly too low that it seems like I'm developing Hypothyroidism.  I already knew this but to hear it and now have to be monitored to see if I need medication for that.  I also will be going to an Immune, Allergy, and Infectious Disease doctor in the next few weeks because of my Steven-Johnson's Syndrome.  Thankfully, I have not had a problem with any of the medication I have been given for this surgery and recovery. 

I am so thankful for my amazing friends that have been bringing us dinner every night since my surgery.  It is such a relief to not have to worry about cooking.  You ladies are amazing and we are forever thankful for your kindness and generosity. 

Until next time....

Surgery & Day 1 Post-Op

Yesterday, was my surgery day.  It went okay.  It could of been better or worse.  I arrived at the hospital at 0540 by that point my bleeding had slowed down to a light flow.  I went back to be prepped around 0630 at that time I spoke to about 15 different people.  I had a BHCG test done and it was obviously negative so we could move forward and do surgery.  A nurse started an IV in my left arm, and they gave my fluids and started me on strong antibiotics to prevent infection.  I finally got prepped and they doctors came and got me.  I kissed John and my mom good bye.  Once in the OR I moved to the table and one of 3 Anesthesiologist noticed my IV was blown.  So, they tried to start another IV in my right hand.  Since my veins and hands are so small the catheter wouldn't go all the way in, so that was a no go.  Finally, they started an IV in my wrist even though the hit the nerves and my hand and arm felt like it was being cut off.  I finally got a good cocktail and I was out.  Surgery officially started at 0720.

Once I was under the cutting and poking and prodding began.  They made 2 incisions.  One through my old belly button incision and one through my incision from a surgery in 2009.  Once in the began the Hysterasalpinogram.  Here are some graphic pictures of what was seen while inside of my uterus.  The red splotches are Endometriosis implants.

This is where my Fallopian Tube opening should be.  As you can see there is scar tissue and Endometriosis over the tube opening.  They removed the tissue and made a hole to reveal the next image.

This is the hole they had to make to look inside my tube and try to inject the dye into. 

So as you can see my tube was 100% blocked and is obstructed.  It was not able to be surgically cleaned out because of the risk of damage it would further cause.  The tube is very diseased and this would explain why we haven't been able to get pregnant.  Also, they tried to inject the dye into the tube  once the made a hole.  The tube was so blocked the dye wouldn't enter the tube.  One option to clear the tube is month to month injections of Lupron.  Taking Lupron again is not a decision I will make over night.  It will take some thinking and medical evidence that it will actually help my one and only tube.  I do not want to do Luprn again but at this point if I don't try something the disease can cause my tube to have to be removed.  It could also spread to the ovary.  We will have to wait and see what my doctor says on Friday. 

As far as the Laparoscopy goes they found a few new implants which were burnt off.  To my doctors surprise I had a unexpected cyst on my tube.  The cyst was removed and sent to pathology. 

These are some of the places that my implants were burnt off of.

Left picture shows the cyst and the right picture is after the cyst was cut up and removed.

This is where my left ovary and tube was before being removed last December.

The doctor recommended not to have surgery to fix the tube since it would damage it more than it is and that we would benefit best from IVF.  My Post-Op appointment is on Friday and we will discuss options, etc.


POST-OP DAY 1

Today, I am much more sore than I was yesterday.  My stomach is distended and we are having to keep an eye on that.  I think it is okay.  Probably just swollen from the obvious like being cut open, having gas inflate my abdomen and also not being able to go to the bathroom.  If it is not better by tomorrow night and or gets hard then I have to call the doctor ASAP. I have been taking my Zofran for nausea every 8 hours and half a Percocet every 6-8 hours as well.  I am feeling pretty good needless to say :P

My belly button incision is sore.  I can't really feel the other incision, thank goodness.  My shoulders are feeling better after taking a gas relief medication.  It is amazing how bad the gas they inflate your abdomen with to move your intestines out of the way hurts and how it moves through your body cavities.

I have been taking it easy today.  My mom and I went for a short walk this afternoon after it stopped drizzling.  I am taking it easy but I can't just lay/sit up in the bed all day.  I have to be active.

I will say I am not happy about the outcome of surgery in a way.  Good news is my ovary is fine.  Bad news my tube is very diseased.  I hope and pray that it can be fixed with medication and that John and I will one day be blessed with a healthy baby or babies.  No matter how we have children if it's through the natural way, IUI, IVF or adoption we will have a family and that child or children will be loved so much and a miracle.

Going through this at the age of 23 isn't easy.  I am not saying it isn't hard for others at all.  For anyone that has ever gone through this knows what it feels like.  I know I am not alone in the battle against Endometriois, and Infertility.  I have been through a lot in the past few years health wise.  I have had my ups and my downs.  I have wanted to give up on this battle but I haven't.  I am so blessed that I have a husband that supports me through all of this chaos!  My family and friends are amazing and supportive as well.  I couldn't ask for better people in my life to support me. 

Until next time.....

A month from HELL!

The last month has been absolutely ridiculous for my health and it is still going downhill!  If one more thing happens in the next few days I am going to literally loose it!!

First, it all started with a simple sinus infection on November 8th.  I got better about 2 days after waking up feeling like crap thanks to the medication my doctor gave me.

Second, thanks to the Singular I was given I woke up a few days after starting it with a rash in random places.  That was on November 15th.  Naturally I took Benadryl and called the doctor.  What looks like a normal rash for most people can be a fatal rash for me.  I have an autoimmune disorder called Steven-Johnson's Syndrome.  It causes reactions to mostly penicillin's and sulfa drugs but I am an unique case.  My immune system is so suppressed and my skin so sensitive anything can set it off.  The rash can take hours to days to fully appear.  It dries out my organs, and mucus membranes in my entire body.  When my skin starts to blister or I develop blisters in my mouth it is when I become more likely to die.  My skin then begins to slough off and I would need to be put into the burn unit or ICU.  Anyways, back to this reaction, I took the Benadryl for 24 hours and then the next day it had spread so I immediately went to the ER on November 16th.  I was given 3 IV meds to try to clear the rash up.  If this didn't work then we would know if I was in a full blown reaction.  Thankfully, the reaction was caught in time and the medication slowly but surely made the rash go away.  See I have been down the road of having a severe reaction and nearly died when my lungs dried out and blood pressure dropped to 45/23.  When I break out now I take action because I don't know if I am going to die or not.  So if you ever see me panic over what looks like a small rash this is why.  I will be going to an Allergy and Immune Specialist, and Infectious Disease sometime in the near future to pretty much figure out what is going on and to be a lab rat!

Third, on November 30th I woke up feeling fine.  I had breakfast which was 2 pieces of toast and a cup of greek yogurt.  After I ate I felt queasy but nothing I couldn't handle.  I then went to my Pre-Op for my Laparoscopy and Hysterasalpinogram.  Everything was dandy until I got in the car to leave.  I felt like I was going to vomit everywhere.  Luckily, I didn't get sick until I got home.  For the next 4 hours I vomited 9 times.  I was so exhausted, weak, and dehydrated I knew I needed help.  I couldn't hold anything and I mean anything down!  My fever wasn't to terrible at this point.  With the advice of a close friend I decided I needed to go the the health center in town to get fluids.  My good friend took me to the center.  By this point I had no real fever, and they gave me a tablet of Zofran.  They decided I needed an IV which wasn't rocket science.  I looked like death literally.  I was so dehydrated my veins were collapsed and they had to use a newbown IV cath on me.  Even that took 10 minutes to put in.  After hours of getting fluids I started feeling better.  Finally, for the first time in 10 hours I was able to pee.  It was great lol.  I finally was discharged and went to my merry way with being diagnosed with a stomach virus.  I still don't the greatest now but I sure as hell feel better than I did on Friday.

Fourth, yesterday started like a normal day with a follow up appointment for the stomach virus.  Well, we weren't trying last month because of the fact I am having the surgery and the uterine x-ray.  I started spotting yesterday morning before my appointment and was like this is odd, my period is a week away.  So naturally I got all excited because it could have been implantation bleeding.  I went to the doctor and we talked about the stomach bug and the spotting.  So we did a BHCG, and a thyroid test for Hashimotos Thyroiditis. I was thinking of how wonderful it would be to be pregnant and I could cancel surgery and all of that jazz!  Results came in a few hours later.....  I am NOT pregnant, my period started a week early which is unusual and we don't know why it happened.  Thankfully I don't have Hashimotos Thyroiditis!!! I called my OBGYN to tell him my period started!

Fifth, I may have to cancel surgery because of my period starting a week early.  I can't be bleeding with a medium or heavy flow and have the Hysterosalpinogram done.  Since I am allergic to the IVP dye they use when not performing surgery the doctor wants to so them at the same time so he can use none iodine dye.  I am PISSED!!!!  My mother is on here way up here right now to take me to surgery and take care of me after and we won't know until tomorrow night rather or not I am having surgery Friday morning.  How the hell am I supposed to know what my uterus is going to do Thursday night or Friday morning.  I have no control over it obviously.  I am so frustrated I could shoot Bambi!

Anyways, I may or may not have the surgery Friday.  Please pray that my lovely period plays nice and allows me to have it on Friday.  I am in a lot of pain and don't think I can wait much longer to have stuff removed and burnt off.

Until next time my friends...........