Period? What Period?

So it's been awhile since I updated.  Reason being I haven't had much to update on.  My periods have been pretty non-existent since around December.  They last maybe 1-2 days and are very light.  Luckily, they are also pain free.  I'm not sure if I should call my doctor or not about this.  On one hand, I love (almost) not getting a period, but on the other hand, it seems like something is wrong.  Possibly the damage to my ovaries from the endo is starting to surface, and then the oophoropexy could have caused damage as well.  I know that most of the damage from the endo was done to my ovaries, so if there is a problem with them, I would cease to ovulate, hence ceasing to menstruate, correct?  This is me being Dr. Google.  I think I'll just call my doctor and see what he thinks.

Still in pain...

Nothing new to report, I got my period on Monday and had to leave work early I was in so much pain.  I'm so glad I (knock on wood) don't get sick during the year, because all my sick days end up being used for the endo. 

I have accepted that the surgery did not work, i.e. the doc missed some, or I do in fact have adenomyosis or adhesions that is causing the pain. 

A girl I work with just had a hysterectomy and I have to admit I am jealous! 

My "NoUterusTalkAllowed" Blog

I went ahead and created my new, no uterus talk allowed blog.  If you want, you can follow it here.  I'm still going to update this blog with details about my endo, but I wanted a place where I could talk about other things than my uterus!  Of course, since endo is such a part of me (unfortunately) I will inevitably end up mentioning it on my new blog, but I wanted a separate place to talk about POSITIVE things going on in my life. 

What IS normal?

Got my fourth post-op period yesterday.  It was painful, but not AS painful as they were pre-op.  The worst part is very intense sharp pains in my ovary area (those have gotten worse since surgery), so I wonder if they are twisting up again.  Maybe adhesions could cause them to do that, not necessarily endo?  I do believe that my doctor removed some endo, but there is either some left, the adhesions and scar tissue are really what's causing my pain, or I have adenomyosis. 

My husband asked me if I was just getting cramps like everyone else does, or if they really are bad endo cramps again.  I get what he was getting at -- are these cramps normal ones that someone without endo gets? I don't think so -- the pain is pretty bad, and it's sharp, not a dull cramping. I honestly don't know what it's like to have a "normal" period.  Other people I've known (without endo) don't ever mention their period or pain, so I have to believe the pain I am still feeling isn't normal.

I've also heard people who go through labor and childbirth say labor pains are like "really bad period cramps".  So I wonder, bad cramps for THEM?  Would I tolerate it just fine?  I mean, if labor is worse than my kind of cramps, then that scares the crap out of me and honestly could affect my decision on having children!

Got my surgical report

I finally got the official records from my surgery. I pretty much already knew everything, but two things surprised me:

1. I had a lot of adhesions. Like, everywhere the surgeon went, he found adhesions. I assume this is from the other 4 surgeries I've had. They were especially bad on and around my ovaraies (hence the oophoropexy). When I talked to him he didn't go into too much detail about this, but the report makes it seem like I am covered in them, which might explain why I am still in pain.

2. My surgeon sent 6 samples that he excised (it did say specifically in the report that he excised) to the lab. The pathology report came back as showing "no endometriosis found" on 3 of the samples! If there was no endometriosis found, what was that tissue? Obviously nothing too bad, but it makes me wonder how much endo I had if I am still in pain.

So now I am back to square one, it feels like.

Been awhile...

As usual, it's been awhile since I blogged. Although when the title of the blog is "My Big Busted Uterus", you're kind of limited as to what you can write about! Maybe I should have another blog that talks about something fun! I can call it "NoUterusTalkAllowed".

Last month I had horrible cramps, which was my third post-op period (and it also came a week early! yay!). I have also been feeling a pulling sensation in my lower abdomen, like I had before my surgery, and what I assumed was my ovaries pulling and twisting themselves into my uterus. So, I'm not sure what is going on. I'm going to go ahead and be a pessimist and say the surgery didn't work. Period #4 is due this week, so I will see what happens.

Cramps... again

Last Wednesday I got my second post-op period, and it was painful. I was only one month out of surgery, so I tried not to get too down about it, but it was hard. Here I am popping Aleve every 4 hours, once again. Here I am worrying about calling off sick, once again. Here I am planning my life around my period, once again. It was depressing. I was seriously excited about having a pain free period! Which is kind of lame, I guess. I really hope next month it gets a little better. I swore that was my last surgery, and I meant it!

Follow-Up Appointment

So I had my follow-up appointment for my surgery. Overall my doctor didn't really tell me anything different than I already knew, which was good. He did say my ovaries, especially my right one, were pretty damaged. He also did an exam and it was the first time ever I have not been in excruciating pain during or afterwards. It gave me a lot of hope!

I am supposed to get my 2nd post-op period this Friday, so we'll see how it goes!

Surgery Update!

I can't believe it's been a month since my surgery! I was taking a break from email and things got pretty busy at work. This is going to be pretty long, but I know it always helps me to read other people's experiences, so I wanted to share my story. Let me give a quick recap:

Surgery was on July 13th, and overall it went well. It took longer than I thought, about 2 hours. In the surgery my doc found:

Endo on my cervix, ureters, uterus and ovaries. Nothing on my bowels! He said it was moderate, not severe. I have really cool pictures of everything that I wish I had digitally to share. He excised all of the endo.

My ovaries were the most damaged. He did this crazy thing with my ovaries, called an oophoropexy, because apparently both my ovaries were twisted and deformed from endo. They were actually sticking to my cervix! The pictures make it look really gross. No I wonder I was in so much pain! So through the oophoropexy he sutured them up and suspended them to allow the area behind them to heal. When he sutured them up, there were 2 tiny incisions on my lower abdomen with little tubes in the shape of a circle that helped hold them up, or anchor them. Very weird feeling.

Including the incisions for the oophoropexy, I have 6 incisions total from the surgery.

Recovery, as always, was a struggle. I have low blood pressure to begin with, and right after surgery it always drops really low and I have a hard time staying awake. My blood pressure immediately post-op was 70/54! I was in recovery for about 3 hours.

Then, of course, you have to pee before you leave, even though you haven't had anything to drink for 24+ hours. After finally peeing, I was sent home around 4:00 with some Percocet and Ibuproferen. So much for being home by 1:00!

I had a really hard time recovering until Thursday. I could not stand up because of the oophoropexy, and it was extremely uncomfortable. Not painful, but I literally could not stand up straight. I ended up taking the whole week off work. I was also leaking a LOT of fluid from the 2 incisions where my ovaries were suspended. I was going through bandages about every 2 hours. It was pretty gross.

That Thursday I went to the doc to have my ovaries "cut loose". WEIRDEST FEELING EVER! He snipped the little plastic tube and I could literally feel my ovary fall back into place; like a little marble or ball being dropped into gel or jello. So weird.

After that, I felt so much better. I was able to walk around and sit up more.

The pain from the gas was also pretty bad this time. I actually had pain up until 2 weeks after surgery.

After 1 week off I went back to work, but I took a few half days. I was still feeling really tired and not totally myself. I was also still very bloated. That didn't totally go away for about 2 1/2 weeks.

About a week and a half after surgery I got my period. It was very painful, and at first I felt anxious, and immediately thought "it didn't work!". But I figured I was still healing inside so that's to be expected.

I am now almost 4 weeks post-op. I feel pretty good, although I never really had pain separate from my period, so the true test will be next week when I get my period.

So that's my story. My post-op appointment was today, but I'll make a seperate post for that.

I have really high hopes that this surgery works. I'll certainly keep updating on (hopefully) being pain free!

Oh, and PS: The enema wasn't that bad! Not good, by any means, but I lived through it.

Surgery is Tomorrow!

We have to be at the hospital tomorrow at 5:15! The Husband is not going to be liking that. Surgery is at 7:15. Barring any complications, I really hope to be home by around 1:00.

I was allowed to eat a light breakfast this morning, which surprised me. I had a couple scrambled eggs. Only clear liquids for the rest of the day. I am going to clean the whole house today and try to keep myself distracted. Maybe I'll make some Jello!

I am still pretty nervous about tomorrow. Of course, I had to go and Google "Laparoscopy complications". Why on earth would I do that?! Apparently the two most common are burning of the bowel and lung embolisms from the CO2 gas. Not really what I wanted to hear, but these complications almost always happen with inexperienced surgeons. My surgeon is the Chief of Minimally Invasive Gynecologic Surgery at the university women's hospital, so I do feel confident in his ability. I've certainly had surgery before with less qualified people!

Oh yes, don't worry, I'm still freaking about the enema. I was mortified walking around CVS trying to find the "Enema Aisle".

I'll try to post an update sometime tomorrow or Tuesday, depending on how I'm feeling. I hope I'll have some positive news to report.

Surgery in one week!

Hopefully by this time next week I will be out of surgery! I won't know til Friday what time my surgery is, but I'm crossing my fingers I get an early time slot. I got my blood work done last week, I'm assuming everything is all good there. I'm trying to get as much as I can done at work this week so I don't have anything hanging over my head while I am out next week.

7 more days!

Endo Bowel Fears...

My latest fear is discovering endo on my bowels and waking up with a colostomy or bowel resection. I'm pretty sure there is something going on in that area due to my pain and the extremely painful exam I had about a month ago. I trust my doctor and I know he specializes in this, but if I have had endo for, say, 14 years, and it's been growing down there this long, I am worried at the damage that has been done.

I know I'm probably worrying way too much about it, but I think what brought this on is when I got the packet in the mail for surgery, I read that my bowel prep is an ENEMA! Um, what?! I've had 3 laps, and never have I had to do this, I've always done the gross drink and not eaten for 24 hours. So then I start thinking wow, he must really think there is something wrong that I need to do this. Then there was a downward spiral of panic of giving myself a freakin' enema.

Stay tuned for the "How the HELL do I give myself a freaking enema and can't I just eat a bunch of laxatives" post.

Surgery is Scheduled!

Yikes! I can't believe I made the decision. And I can't go back because the husband already took off work and it would be a pain in the ass to go back and change it now.

So, laparoscopic excision surgery is scheduled for July 13 with my new doctor. I am SO nervous. I'm nervous that the doctor will either not find anything, and that's surgery number 3 for nothing, or he's going to find something horrible. It's one or the other.

Although I'm really confident in my doctor, I am only about 80% confident that he is going to find endometriosis. When I told him I was thinking about having a hysterectomy just to be done with all the pain so I can move on with my life, he said it was jumping the gun. But if I wake up from anesthesia and they say they found nothing, like last time, I will be devastated.

But, for now I am jumping that gun! Countdown til July 13! 25 more days...

Huh!?

This morning I got a call from my new doctor wondering if I had any questions or concerns left over from my appointment on Friday! My first thought was, WTF? A doctor is calling to see if he can be of service to me? And it's not a nurse, it's the actual doctor? This is too good to be true.

After I got over the initial shock, I did have a few questions. I asked him what happens if he gets in there and there's no endo. He said although it's highly unlikely based on the physical exam, he said we'll cross that bridge when we get to it. I said I feel like just having a hysterectomy and being done with it all, and he said that's jumping the gun, let's wait and see what we find and then we'll decide which route to take. I also said (again) how reluctant I am to have surgery, and he said (again) this would really be my first surgery since no other doctor treated me properly.

So that really made me feel even better about having gone to the appointment and is making the decision to have surgery a lot easier. Right now they are scheduling about 7 weeks out, so it won't be at least til the end of July.

Appointment Update

Well, yesterday I had my appointment with my new doctor about my endometriosis/adenomyosis. I really liked him, and it was an interesting visit. It was nice that when I first got there, I went to his office and we talked for about 10 minutes, then we went to the exam room, and then we spoke again afterwards, and it was always just him. I didn't have to deal with any fellows or med students.

Just to recap:

• He started off by saying "Lupron doesn't work, it only suppresses the endo while you're on it, then it comes right back". I wanted to reach across the table and give him a hug!
• The exam was incredibly painful, the MOST painful exam I have ever had. He seemed confused, and asked me if any of my other doctors had ever examined me like that before, and I said no.
  
• After the exam, I asked him what he thought about me having endo vs. adeno, and he thought my symptoms were more aligned with endo (pain concentrated on one side, bowel pain etc). After the exam I have to agree; I could literally feel where the endo implants were.
• I expressed my total and utter reluctance at having a THIRD surgery, especially since my last lap was negative. He flat out said that he would consider a surgery with him my first surgery, since the others were basically pointless because the other doctors did nothing while they were in there and obviously weren't looking hard enough. He called them "placebo"surgeries. Slam! He also said I most likely did not have any scar tissue, since, again, I really haven't had surgery before.
  
• He does in fact excise endo, so he said this surgery would be a lot more invasive than the "non-surgeries" I've had before, and will probably have a slightly longer recovery time.
  
• I asked him about going on birth control after surgery to stop the endo from coming back (due to my migraines I can't be on hormonal BC); he shook his head and said the only reason to go on birth control is to not get pregnant. He said if endo is excised properly then there is no need to go on birth control; only when it is not removed is when doctors put you on birth control.
  
  The conclusion to the appointment was that I am going to think about surgery and call to schedule it. They schedule about a month out, so I need to figure out summer plans and work stuff. I am also, despite having a lot of confidence in this new doctor, a little apprehensive that it won't work. Plus, surgery is always risky and I'm just not a fan of the whole process of anesthesia and recovery.

So that's that. I think if I do schedule surgery I'll try to do it for the beginning of July, or it will have to wait til the Fall. I have a lot to think about!

Tomorrow's Appointment

Well, tomorrow is my long awaited appointment with a new doctor. This doc is supposedly an endometriosis "expert", at least that's what I'm hoping, since he does excise endo and I've talked to a few people who have had successful surgeries with him. I am a little apprehensive since I don't want to have another surgery and I figure that's what he'll tell me, but I'm trying to remain optimistic. Also, the only bad things I've heard about him is that he is hard to understand (he's foreign) and he has a weird bedside manner. As long as he doesn't try to put me on Lupron again I think I'll be okay! I'll try to post tomorrow night or Saturday to let everyone know how it went.

Thyroid problem? Add it to the list!

A thyroid problem? Sure, why not! Add it to the list of health problems that I have to deal with at age 29.

For the past year or so I've been feeling extremely fatigued, cold ALL the time (today it was 80 degrees and I had on a wool sweater and a space heater on in my office!), and been getting heart palpitations. Given my attitude towards doctors, I didn't really feel like seeing someone, but it got to the point where I just couldn't take it anymore.

So, I got some bloodwork done and it turns out I'm hypothyroid (underactive). Apparently a lot of people with endo have thyroid problems, for some reason. So I'm going to start taking Synthroid and hope I start to feel better!

May Have Found a Specialist in My Area!

So in one of my hundreds of Google searches I may have found an endometriosis specialist in my city. He does excision surgery and actually knows what adenomyosis is. I talked to a few women about him who have had surgery with him and they have all good things to say; one had endo excision surgery and she is still pain free 2 years later, and one unfortunately had to have a hysto for adenomyosis. She is now pain free as well. So, I made an appointment for June 5. One of the women I spoke with did say he will be reluctant to do a hysto if I have not yet had kids, which I haven't. That worries me a little, but I need to stop putting the cart before the horse and just see what happens at the appointment.

The pain has been unbearable lately; I just took my first sick day last week which I was so mad about! I was doing okay since Christmas, but I guess it's coming back in full force for some reason. With summer coming and the beginning of my planning everything we do around my period starting up, I just decided it was time to do something about this once and for all.

I Knew That Would Happen...

Yup, I decide to start a blog, am really good with keeping up with posts and then I drop the ball. It's pretty much how I run my life actually! So I'm back and I'm going to try to keep up with this again, since I might have some more updates coming soon...

Osteopoenia

So I've had ostepoenia for the past 5 years, since my last round of Lupron. It doesn't affect me, I feel fine. I had a DEXA scan the other day to see how my bones were doing, and since the last idiot doctor I saw for endo thinks I should go on Lupron a THIRD TIME. I'm obviously not doing that, but I thought since I had the script for the scan I may as well get it done and have the results sent to me, since by now I may as well be a freaking doctor. (Let me add that I was the youngest person in the waiting room by say, 30 years). Anywho, I was happy to see that everything stayed the same. My spine is fine, and my hips were in the 78% percentile for my age range, which isn't great, but I think with exercise and being more religious about taking my calcium, I can get that a little higher.

I'm a little concerned because my mom was just diagnosed with osteoporosis at age 52, so I definitely need to watch and be careful. Even though I've never felt better on it, there is no more Lupron in my future. Certainly is crazy though how doctors will dole that stuff (well, anything really) out like candy.