But Mine "Goes to 14!"

 

Today was my 6 week follow up appointment with Dr. Mac.  And I must say…I am feeling very much like a bad ass.  Pretty damn beastly in fact…which has nothing to do with the facial hair. 

First thing Cori (surgical nurse) did when we got there was to give me two shots of lidocaine. These were given on the left side of my lower abdomen. Here I wasn’t as much of a bad ass as I was a big wimp.  Jim came over and let me squeeze his hand while she gave the injections. They didn’t hurt, but the anticipation was AWFUL.  The shots were to numb me for the insertion of the bHRT pellets.  It took about 15 minutes for them to work.  

Dr. Mac then came in and did a vaginal exam. That was all clear, which we expected.  After that, we discussed my surgery and lab results.  I had no idea there needed to be labs. I forgot that everything that comes out of the body has to be examined. Makes sense.   First off, the cysts that were on my ovary and the ovary itself were all normal other than the endo.  That was not a surprise.  The appendix was apparently covered with implants and adhesions, but nothing else. The thing that surprised me was that they had to take out lymph nodes that had been compromised with implants.  I had not realized this had happened.  Doc said that those lymph nodes are so close to the ureter that it would be nearly impossible to remove them without some sort of damage and this is when he nicked mine.  Thankfully, the lymph nodes were clear as well. 

After that I asked him to explain the various stages of endometriosis and asked where I fell on that scale.

 
Very simple run down: 

Stage I:  Minimal.  Only a few endometrial implants within the pelvic area. (yet, this can still cause excruciating pain for women)

Stage II: Mild.  Implants in the pelvic cavity and involvement with ovaries. 

Stage III: Moderate.  A moderate amount of implants with adhesions throughout the pelvic area.

Stage IV:  Severe.   Implants throughout the abdomen…not just the pelvic area. A lot more adhesions.  Involvement of bowels, bladder, etc. (he said he just finished working with a woman who has implants on her diaphragm!) 

OK. So I was definitely a Stage IV. We suspected that, just nice to know for certain.  Then he said “Let’s put it this way, on a scale of 1-10…you were between a 14 and 15.”  This was most likely inappropriate, but I looked at the husband, laughed, we high fived. I said “YES! I WIN!” Thankfully, Dr. Mac is understanding of my sense of humor. 

Now, the reason I feel like a bad ass; Doc said that from the day I came out of surgery, I have been doing better than most patients he has dealt with who have had this sort of procedure.  Sure, I’ve been whiny and have felt sorry for myself on and off, but my overall healing has been damn fast.  Not Wolverine fast. But still impressive. 

 

Picture grabbed from: http://schmoesknow.com/is-there-a-wolverine-post-credit-sequece-spoilers/

 This REALLY made me feel good because there have been a few times where I doubted myself when friends have said they were worried that I wasn’t bouncing back faster.  I am NOT upset with them at all! They were all women who had either had a hysterectomy themselves or C-sections. They only had their own experiences to compare it to. They did not realize the extent of mine, which included a horizontal AND vertical incision. (yes, I am emphasizing that, because the doctor did)  So getting confirmation/validation from my doctor that I am actually healing MUCH FASTER THAN EXPECTED is a WONDERFUL feeling!

Then it was time to insert the hormones.  He made an incision that was less than an inch long. He then inserted the pellet introducer into the incision, dropped the pellets in and used the plunger to insert them under the skin. (4 estradiol pellets and 1 testosterone)The pellets are a bit larger than a grain of rice.

The site is covered with a bandage and steri strips.  It is still tender, but not painful. 

Picture from: http://www.truemd.com/2010/09/hormone-pellet-therapy-safe-for-women-and-men/

A bit of an explanation of the pellets and my hormone levels:

My doctor would like my levels to be over 200 for my estradiol (E2) and 100-300 for my testosterone (T). (I will TRY to explain both of these hormones in another post)

My initial tests back in May had my E2 at 41 and my T at 66.

My 2^nd test June 27^th showed my E2 at 283 (due to the birth control pills I had to take pre-surgery) and my T at 57. 

Surgery was July 17^th.  Doc inserted 1 T pellet and 4 E2 pellets while I was in OR.

My 3^rd test was Aug 16^th.  My E2 was 162.91   and my T 125.

Now we wait to see how things progress.  I did great with the initial insertion of the pellets. Hoping things continue to improve. 

The husband said that part of him will be very sad if it turns out that my depression, anxiety and very low libido were all due to a major hormone imbalance that could have been fixed if we had only known.  I don’t really feel that way at all. I know it has been a number of things that have contributed to those issues. But right now I am just thrilled with the thought that maybe we have options and WooHoo! I can start feeling BETTER! 

Oh yeah, I almost forgot!! I am cleared to start running!  He just recommended that I wear compression shorts or use the binder.  For now, I will use the binder.  And hope that in the next couple weeks I can find some compression shorts that fit me properly. He told me to listen to my body. If it hurts, then STOP. If I am tired, then REST.  He also said that I should not expect to really start feeling "normal" until about 3 months. 

How I Got Here

Sorry this is so long and disjointed.  Wanted to get down as many details as I could remember just in case it might help someone later on.

****

This all started 2 years ago. Well, it started long before that, but I have no clue when that was.  So we will go with 2 years ago.  May/June time frame of 2011, I was walking upstairs and had a very sharp; double me over, pain on my left side. When I got into our bed I was in the fetal position and in tears.  It lasted about 30 minutes or so, and then subsided.  I continued to be uncomfortable for a while, but no more actual pain.  

Next morning I called local OB/GYN and explained what had happened. Went in, talked to Nurse practitioner.  She said it sounded like a burst cyst.  One thing lead to another, scheduled trans-vaginal ultrasound (let me just say, if you have active ovarian cysts when this is done…holy hell, does it hurt!) they found 2 more cysts. Recheck a few weeks later, one cyst has grown quite a bit.  End up with surgery to remove cysts in November.  I waited that long because I was in school and asked to wait until Thanksgiving break. 

Laparoscopic removal of cysts and left ovary. Discovery of smaller cyst on right ovary, removal of those cysts and the surprise discovery of severe endometriosis. Uterus glued to bowels. Things are all stuck together down there.  Surgeon removed what adhesions she was able to, but would not risk messing with bowels.  

The endo diagnosis shocked the heck out of me, since I really wasn’t that heavy of a bleeder and cramps were manageable.  The only thing I really knew about endo is that a dear friend suffered quite a bit years ago and had to go out of state to a specialist to have surgery.  I wasn’t suffering, so how was my diagnosis “severe”? 

As I started reading more about endo, I learned that some women with severe endo show few to no signs of it. And some women with only a few endo implants have severe pain!  I also discover that I HAD been having symptoms for quite a while and just thought they were sort of normal and age related, like consistency of flow and lots of clotting.  But the most obvious and most painful sign was bowel related. Like clockwork, on the third day of my period I would have severe intestinal cramping and rectal pressure. I would FEEL like I had to go to the bathroom, but nothing would happen. I just figured I was constipated and dealt with it. Only lasted a couple hours one day a month. I just figured it was part of the deal. 

Then, starting shortly after the first of this year (2013), that one day a month turned into 2 and then 3 days and eventually, it lasted 2 weeks. I was taking 800 mg advil every 6 hours to stay functional.  I had multiple nights where the pain would wake me up.  Finally, May 2^nd I went to see the OB/GYN at the local office. (This was a new doctor. Original ob surgeon moved practices)  I was not terribly comfortable with his answers. He had suggested surgery, but said he would want me on Lupron for 6 months beforehand.  Researched Lupron and decided very quickly there was no way in hell I would use that.  So, I searched for a 2^nd opinion. 

In the interim, I also saw NP regarding mood swings. Hormones were all over the place. If I wasn’t crying I was raging.  I would get so mad that the husband could see my BP go up. My chest would start to get red, then it would move up my face. It was out of control.  NP put my on lowdose BCP.  JunelFE.  Let me say, it worked wonders.  It also turned out to help relieve some of my endo pain.

I found 2^nd surgeon. He read the post op notes from first surgery, scheduled more tests and several consultations, came to the same answer, surgery was needed and he felt it best to take out the uterus and remaining ovary. However, he said he refused to use Lupron.  He has not used it in years because of the nasty side effects. (THANK YOU!)  

Hysterectomy was not the answer I was hoping for. Oophorectomy REALLY wasn’t what I wanted to hear.  But after researching and driving myself crazy, I do think this is the best thing for ME.  I certainly pray that it is. 

16 ½ hours to go.

Pre-op: Hopes, Fears, and Lady Junk

Let me start off with a warning; although I will ramble on about family, school, photography, and life in general, that is not the main point of the blog.  I want to be open and honest, sometimes painfully so, about my hysterectomy, menopause and bHRT.   So, if words like vagina, cervix, dryness, ovaries, and sex make you feel utzy…you might want to find something else to read.   If occasional irreverent humor about the above topics bothers you, this might not be the place for you. 

Oh,  and if you are easily annoyed with people who post far too many pictures of pets, flowers, vacations, etc…run away, don’t look back. 

You’ve been warned.

Now, let’s talk about “lady junk.” (I LOVE my friends. Thank you J.C. for the terminology. This will now be a new favorite phrase and each time I use it, I will think of you and giggle!)

My surgery is 10 days away.  Supracervical abdominal hysterectomy (SAH) and oophorectomy via ~8 inch incision.  (SAH meaning I am keeping my cervix. I have no family history of breast or cervical cancer. I WANT to keep my cervix and my doc has absolutely no problem with that)  Really hoping for a horizontal cut, otherwise my bikini wearing days are over.  My GYN surgeon will have a colorectal specialist on call, just in case. Surgery is due to endometriosis. I have severe adhesions that are now causing issues within my bowels. Lots of stuff is glued together. Thankfully, my colonoscopy was clear, so the CR doc feels the likelihood of a bowel resection is minimal.  But he may still be called in to cut any endo spots the GYN feels is too risky to do himself. 

I won’t lie. I am nervous. In fact I am down right scared. This morning has been rough. More than once I have considered calling my GYN and telling him that I have changed my mind. That I am all better.  That I don’t need to have this done.  But I know that once I am healed, I will feel better and have more energy than I have had in quite a while.  

I have had issues with anxiety for MANY years.  So, me being nervous and losing sleep over this is no big surprise.  But in my quest to become an educated patient, I am making myself down right CRAZY.  Trying to wade through the extremes on either side of the hysterectomy and bHRT debate.  Trying to listen to the women in my life who have had it done and feel reassured that MOST of them have said it was the best decision they have ever made for their bodies. Trying to feel reassured that my Doc is one of the best specialists in women’s reproductive issues in the region. 

I DO think those things have helped me. But it is hard to balance that with the fear.  Fear of being cut open. Fear of not being able to produce my own hormones. Fear of problems that MIGHT come from bHRT.  Fear of loss of bone density, energy, and sex drive if I don’t use bHRT.  Fear that sex is not going to be enjoyable ever again just because my “lady junk” has been messed with!!!  I have NEVER had a terribly high drive, but I DO enjoy the hell out of sex when we have it. And I am terrified I will lose that enjoyment.  

On the other hand, I have read so many positive reviews from women who have had bHRT. And no, I am not talking about reviews on websites that endorse bHRT.  I have hope that my energy will increase. That I won’t be as scattered brained as I am now. That my sex drive might be kicked up a notch. (God help the man if THAT happens!)  I am holding onto those hopes pretty tight. 

I want to be well educated about my body and my options, but at this point, I don’t know if I am doing myself any favors.  Maybe I should just focus on meditating, keeping calm and prepping the house for recovery.  

Ah, who the hell am I kidding.  I will continue to obsess, not sure my body even knows how to stay calm,  and house prep…it’ll happen at the last minute, just like everything else.