I am 35 years old, living with stage IV Endometriosis, possibly adenomyosis and struggled with infertility for almost 4 years. I also struggled with PPD and now struggle with PMDD. I am a mother to a son that was born at 18 weeks and too precious for this earth; and now a mother to a son born in August 2011. By journaling here, I hope to benefit both for myself and for others that are dealing with this disease and fertility struggles. Thanks for visiting!

Thursday, February 28, 2008

Appointment with the RE today

RE=Reproductive Endocrinologist

I had my appointment today at the REACH clinic in Charlotte. It was a very pleasant (as pleasant as a Dr.'s visit goes) experience. Everyone there was very warm and friendly. The Dr. was very knowledgeable and was able to answer all my questions with great detail. I learned even more about my "disease" than I knew before...all in all it was a very educating afternoon.

So, first of all, I finally heard a stage associated with my endometriosis-Stage IV. There are 4 stages, all increasing in severity. Having an endometrioma automatically places me in Stage IV endometriosis...I didn't know that. Pesky -oma! Anyway, and, I heard again about how severe things really were-sticking bowels to pevic organs, ovaries to abdominal walls, and all sorts of fun stuff. A mess...I was a mess; I am a mess. This is why everything wasn't able to be removed. He said it would nearly be impossible to have removed everything-that would have involved bowel resection and all sorts of not pleasant things. So, where do we go from here?

He said that my OBGYN's suggestion for Lupron was appropriate/reasonable, based on my disease (especially with the GI symptoms-this would be the most appropriate course). In terms of fertility...it can be very beneficial for us. He recommends 3 months (versus 6), with automatic add back therapy-which I found interesting. "Add back" therapy can help with the symptoms and adverse effects from the medication. Some Dr.'s don't use it right away-and he said that's because they aren't educated enough about it-to prescribe a synthetic progesterone....that way there isn't any estrogen being added back. So, that was positive to hear..

No one has been pretentious (is that the right term) when prescribing this medication. They aren't promising me a cure-I know there isn't a cure, and they have been sure to explain that properly. Also, they have been very forth coming about potential side effects, and very encouraging of us to do our own research. I think at this point, we feel more comfortable about moving forward, and feel more educated. Still scared...but, looking ahead and not down.

Our plan:
Next month at the beginning of my cycle, they are going to run some blood tests on FSH and estradol (I know I am not spelling that right)-to check out what he calls my "ovarian reserve" before we start treatment. Just to see where we are in terms of fertility in that respect. Mid cycle I will receive my first shot, with add-back therapy. At this point, my body will go into a medically induced menopause (thus, all the lovely sounding side effects). This will continue for 3 months (1 shot each month). If I am really doing well on the medication with no serious side effects, we may continue out for another 3 months. When done with treatments, it will take a few cycles to get my period back.

After my body kicks back into gear, we will start trying naturally to have a baby. Now, he has already warned us that we are in the 60-70% that will probably need further fertility assistance...anatomically speaking from my disease stand point. He said, you never know what can happen, but, he just wanted us to be informed. So, we'll try on our own for three months.

If we aren't successful, at that point we'll both get some testing done just to make sure everything else is working properly. If those tests turn out fine, then we'll try another 3 months on our own. After 6 total months (normally they would give a year, but with my stage IV endo, they don't want to wait that long) if I am not pregnant in that 6 months, it probably isn't going to happen on it's own. At that point, we will begin IVF if needed.

I like having a plan. And, the plan sounds good and reasonable to us...and I am feeling more comfortable about everything. Knowledge is power-ya know? I am so glad that we went today and I feel good about talking about things in terms of fertility and the future. So, my OBGYN and RE will be working together. I'll go to the OBGYN for Lupron treatments based on the RE's recommendation, and then back and forth between RE and OBGYN for baby stuff! Haha, I asked if I went back to my OBGYN to have the baby, and he said, "We don't catch babies here...I went to school for a long time so I didn't have to get called in the middle of the night". HAHA! I liked his sense of humor. He made me feel very at ease. So, this will be a collaborative effort.

Also, on the GI note, if my symptoms go away with the treatment...then we know it's related. If not, I'll know to investigate further. It's so interesting how all the systems work together.

So, here we go. I'm going through my cycle now. It hasn't been too horrible. I've had quite a lot of nausea, which is unusual for me, but, I'll take it over the unbearable pain any day.

This is a crazy weird thing that I have, but today is a good day and I am feeling ready to tackle it. Please keep us in your prayers as we approach treatment and go through all of what this will bring into our lives. It might take a lot of patience on both of our parts...but I hope that this will be an overall positive experience ahead. Keeping our heads up...thank you for all the support. We wouldn't be so confident without you all.

Tuesday, February 26, 2008

Second "opinion" and supplemental care

Today I went for a free consultation at a natural wellness center. I really like the Dr. I spoke with (naturopathic physician) and I am going to go in for my first visit next Monday. The initial visit is a 3 hour appointment-but she likes to spread her's out over two visits...about a week apart (to gather a food diary in between). I am really interested in the alternative/supplemental methods to managing this pain and reducing the amount of estrogen I put into my body (you'd be amazed!). I am also wanting to improve my overall "immune" health-especially with this recent diagnosis. I am very much looking forward to this appointment!

Also, on Thursday, I have an appointment with a Reproductive Endocrinologist to further look into my diagnosis and to discuss our options...a second opinion of sorts. RE's are considered more specialist than the average OBGYN and have more experience with such diseases. I will kepe you updated on that. I am holding on my treatment decision until I talk with them.

My period is on it's way. Recently I have been feeling very nauseated...never had that before the surgery. Not any constant pain like before....periodic stabs here and there. I've already started on my ibuprofen to get ahead of any pain that comes my way...

Saturday, February 23, 2008

"Gotta get your grieve on to get moving on"

That's a motto a friend and I came up with this week. This week with my diagnosis came a lot of hurt, anger, guilt, frustration...you name it. After I had time to process things, my brain just got overworked-tired-OVERWHELMED. I was throwing myself a little pity party-but was feeling guilty about feeling sorry for myself.

And I was tired of everyone telling me "it could be worse". OF COURSE it COULD be worse...but at the time you aren't really feeling that way. Just because it's not doesn't mean I can't be upset about it though. Doesn't mean it still doesn't suck and that I can't throw myself a little pity party right now. It sucks because I hurt; it sucks to think I might always have some kind of pain; sucks to think of the consequences of the meds that are recommended; sucks to think that my insides could be sticking together again at some point-and that they were at some point; sucks to think my days of surgical removal are probably not over; sucks to think we might have to stress over child bearing...ALL the WHAT IFS and COULD BE's. It just blows. I KNOW it could be worse, and I feel blessed and thankful it's not...but it still was a hard blow and just a lot to take in. I feel truly blessed that things aren't "worse"-but I guess it's just not what I wanted to hear at the time. We all do that though-and that's what friends are supposed to do-we are supposed to turn things to positive and help each other through difficult times. I know myself that I've said that many times to someone in an difficult situation. I appreciate all my friends and family-and again feel blessed to have them as a part of my life.

An insightful email from a friend was really inspiring to me, and I just wanted to share:

Yes--- THIS SUCKS. Feel free to shout it from the roof of your house if you want to….and feel free to shout it to me!

I could roll out the clichés….look on the bright side of things, things will get better, etc etc…but I wont. You have the right to be pissed and angry with the world right now. And you need to be to move on. You need to grieve the loss of how you imagined your life to be. I know it sounds crazy, but its like what you said….it sucks to think of all the treatments etc that might be ahead…but you need to grieve. Get it out all….come out with a clear head and then attack this thing like you know you can. Get the courage to face it head on, and be strong. Mind over matter (ok so there is a cliché for you!)…you know there are always miracles happening everyday….just because people try so hard to overcome things. But you need to get there first, and in order to do that you need to face the reality.

At this point I am still grieving a bit. But, I know I'll be ready to "move on" to deal with this soon. It's okay to feel bad-it's okay to be angry!!! It's all our natural responses...and don't let anyone tell you otherwise!!!

Friday, February 22, 2008

My Endo "History"

I am really not sure where my story officially begins. I've always had painful periods; I just thought they were a fact of life. In college I decided to go on the pill to help battle my symptoms. Although relieved greatly, I began to suffer from migraines, and eventually had to come off about 9 or 10 years later. In the meantime, I graduated college, began my life, got married, and was living happily ever after.

This takes us to about late fall 2007. I had finally stopped BC in April of 07 (had been on and off for several years prior). In October 2007 I noticed my periods were just getting unbearable. I thought it was just the effects of the BC wearing off, and I dealt with it. November 2007 brought on a myriad of symptoms that eventually put me into a frustrating few months of back and forth between Dr.'s.

It started out with diminished hunger and early satiety; with random "pinpoint" pains in my lower abdomen. I felt swollen and tender. I was poked and prodded and given pills here and there to try to deal with my symptoms. In December a random batch of tests proved positive for a bacteria called HPylori (GI issue), and that was handled all wrong. I should have been sent to a specialist right away. Instead I was treated with some crazy strong antibiotics that sent my poor body into an even bigger mess.

I seemed to be feeling okay after the antibiotics, but had unfortunately developed some pretty harsh heartburn (which I am still currently treating). Around Christmas I started feeling "not right" again. The pains were becoming more and more constant, and I just wasted hungry; and when I ate, it was always "too much" it seemed like.

Between Christmas and New Year's I made it back to my primary care physician's office for yet another visit. Pain, TENDER, just overall feeling of "BLAH"!!! She poked around on my pelvic area and I had a particularly tender area on my right side-SHARP! I was sent in the next day for a CT of the abdomen and Pelvis because of suspected appendicitis.

What was found there sent me finally into to some right directions. After having an allergic reaction to the CT dye (of course, right?) and powering through the procedure as to not have to repeat it, the tests had some revelations. #1 was a 2+inch mass on my ovary with some free fluid in the abdomen. #2 was "colitis". I was immediately referred to both a GI and GYN (I didn't have a good experience with my old one and requested a new one at this discovery).

On the GI end-I went to the office crying. I had lost 10 pounds in a week-I was experiencing severe diarrhea that had started on Jan 1-and this appt was on Jan 6. The diagnosis? Antibiotic induced colitis. Which, ironically it treated with more antibiotics. So, I started that course. The diarrhea subsided but my pain and general ill feeling remained.

Next trip was to the GYN. Still on antibiotics and feeling more and more like crap. I had a vaginal ultrasound which further reviewed the known cyst-an "endometrioma" most likely he said. I had no idea. I looked it up when I got home-learned that was a cyst caused by endometriosis. I had never been diagnosed with that, he must be wrong. I was on a"wait and see" basis in hopes this was merely just a come and go type cyst perhaps. I waited 3 weeks for my follow-up. While in limbo for that came my period. It was AWFUL. I was so scared-it was SO painful; I couldn't find any relief. It exacerbated by GI symptoms, and I was sure it had to do with that; that in combo with this large cyst on my ovary.

My follow-up didn't go as expected-the cyst had grown...a little over 3 inches now. I was having daily pain and throbbing...I felt so run down. We decided that it needed to come and that some exploration was in order. Before surgery was scheduled-another period. This one sent me to the ER. I thought for SURE my ovary was twisting or the cyst was rupturing and I'd be sent to emergency surgery. I had never felt such pain before in my life. I couldn't walk unassisted. That Monday I called the Dr. and begged for relief. He agreed and surgery was set for Weds of that week. I was so nervous, but so excited to have this cyst out and the pain gone. I had my laparscopic procedure on Feb 6th.

And with that surgery...the diagnosis. Endometriosis. My organs were stuck together...there were adhesion removals, peeling apart of organs, cysts drained and cyst walls removed. Antibiotics flushed through as my inflammation was so severe; gyno said although he didn't think the GI has correctly prescribed the previous antibiotics, he felt they helped with the surgery. Not everything could be removed.

2 weeks later was my follow-up, and the full reality of what was going on. I am still in the state of shock and disbelief, and not 100% ready (mentally) to move on. I need to get past my grieving/pissed off at the world feeling before I can do so. Perfectly normal. It has been suggested I start treatment. There are options...I am not sure I like the options. BC, which I know gives me migraines; or, Lurpon, of which I am having a hard time finding good light on (but it's hard to tell...I think there is more negative information out there because more people are apt to post/review something negative that positive a lot of times). I need to do my research and find out what is best for me. But, again, right now I am grieving and dealing with the metal blow that all of this has cause. I am still having underlying GI issues, and trying to get answers and deal with that as well. Related to my endo? Not related? So scary and unknown.

I am blessed to be surrounded by wonderful people, including my family. It's so wonderful to have such a beautiful support system. My husband has been absolutely wonderful during this whole ordeal, and I know he, along with the rest of my friends and family, is standing by me 100%.