Sick is forever.

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(Adapted (with typos) from e-mail to six-pack)

I so so appreciated you all taking the time out of your busy lives to email me at length or have non-alcoholic drinks with me!

I guess I am a hopeful and optimistic person (or living in denial?) because I really thought there would be another treatment plan I hadnt thought of.  Dr. Garza was like, you have a disease.  You will have to plan your life around it.  I’m one of those lucky few who will always have recurrent cysts and they will keep growing.  we tried the gold standard treatment and it has improved my life considerably, just not as much as I hoped it would.  in a weird way, it’s a relief to finally know for sure so I can plan a future which has been on hold for a year.

My cysts should be causing constant pain based on size so it’s good they’re not.  I have to pee a lot.  I’m on a pain medication regimen for breakthrough pain and I may be on pain medication the rest of my life.  An IVF protocol would be helpful to pause the spread of endo, as would pregnancy.

There is the possibility of going to the ER monthly to check on ovarian torsion if the pain is level 10 so I can’t ethically take long-term clients.  I asked if I could stay at home and self-medicate.  no.  should I invest in an ultrasound machine?  

I had a doula client already scheduled and they don’t want to cancel despite my health problems so I’ll hopefully get to do a birth in June and then I don’t know where I’ll go from there.  i weirdly love delivering for Amazon if i can make enough money!  I want to avoid a stressful work environment (goodbye mental health, Master’s degree, 5 years of licensure internship) because it causes the endo to grow and spread.  I’ve looked up accommodations for disabilities and randomly taking more time off work than other people is not an acceptable accommodation.  FMLA kicks in after one year.  endometriosis is not considered a disability through social security because you go through periods where you can work. I’ll think about this next month though!  Maybe you have some creative ideas.  Doterra essential oils?

I don’t need to have surgery until the pain is unbearable or it interferes with fertility treatment but there is at least one more surgery in my future.  our dream is that we could have a child first before damaging the right ovary further with surgery, and then go in to remove the offensive right ovary.

I’ve been using my coping skills ever since I got fired last year and I thought I could get through situational depression but I am accepting the situation is not going to end.  it’s time for some antidepressants!   Life doesn’t have to be this difficult all the time.  thinking about how awful I felt before, how did i survive?  The painkillers probably helped.  🙂  I read an article in the fall about chronic disease which describes it as small, unending loss piled upon loss, which you never get to fully process or grieve because another loss comes along and is compounded.  Infinite losses.  We’re going to take a break and enjoy life this next month before making any big decisions.

http://www.socialworktoday.com/archive/070714p18.shtml

Again, thanks for listening!  I would start a blog but the world does not need another endo warrior infertility blog.  [Editor’s note: I started a damn blog.]  Love y’all!

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I’m infertile.

 

birthaffirmation

birth affirmation designed and stitched by Nil

Adapted (with typos) from e-mail to six-pack:

Hi friends, near and far!

We have been anticipating this for a month or so because I take a pessimistic view and also find google to be more helpful than the medical profession at times.  I suppose nothing really prepares you for the finality of knowing with complete certainty what options remain.  We’ve done all the fertility testing, so…

First, there is a 2 cm cyst on my right side that has grown into a 4 and 5 cm cyst in the past month.  I was hopeful this was a cyst which naturally occurs and dissolves after surgery, but now I’m not so sure.  Treatment guidelines call for removal of any one cyst over 5 cm but I’m going to chill on the surgery for now.

I meet with Dr. Garza next week for a treatment plan.  I feel generally good (as good as you can with an autoimmune disease) and I only experience intense pain during ovulation and my period.  I was hoping to start taking clients again next month if I were cyst-free.  I have a standing offer with a doula agency to be a full time doula once I complete certification, which is my dream!  They are aware of my disease and will not hire me if the cysts are a recurring issue.  As I’ve said before, excision surgery was my best hope with this type of endometriosis, but I may have to accept a lifetime of pain medication, more surgeries, eventual removal of ovaries, etc.  We don’t know for sure yet so let’s hope for the best possible outcome!

These cysts are dragging down my ovary on my right side, making it difficult for egg and sperm to meet.  This, combined with a blocked left tube from being fused to my uterus, low follicular count, low sperm morphology, and stage IV (most advanced) endometriosis means that we cannot conceive children naturally or through IUI.  I mean, there’s always a chance, but it would be an anatomical miracle.  Our only options are IVF or surrogacy.  We know our chances of IVF are decreased with the above issues and each passing month with my elderly female body.  🙂  We are in debt from all my medical bills and myself not being able to work regularly.  My parents have helped us with some bills. We’re fine with our current lifestyle, but we cannot afford IVF.  And we know that even if IVF succeeds, we can miscarry.

We’ve discussed adoption and Trent is adamantly against it.  He is even more invested in having a child with his own DNA than I am because he wants to be there for his son like his father couldn’t be.  I mean, I think it’s pretty obvious that having children is a selfish decision at first, to see what you and the person you love most in the world can create so I completely understand not wanting to adopt.  This news is devastating to him but he is hopeful.

We are open about our situation, it’s not a secret, and you know I am passionate about women’s health.  Shut up about it already, Nil!  This is what happens when doctors ignore you or give you the wrong treatment.  I haven’t given up hope but there isnt a single thing about this situation I can currently control, so if we end up childless, I try to look forward to traveling the world.

Please do not feel weird talking about your babies or getting excited about people being pregnant.  I’ve heard some people feel awkward but it would make me sad if I was left out of the greatest parts of your lives.  I also hear on the blogs that sometimes it’s too painful to be around children, but I hope that doesn’t happen to me and I will let you know if I go through that phase.  Ha and Katerina already knows that I watched every video on Meghan K. Edmond’s IVF Instagram account.

As always, thanks for being so supportive and listening!  It felt necessary to write this all out.  Hugs and love!

You should be warned about the HSG

HSG

The table where you will lay for your HSG. Do you see the thigh stirrups at the end? Every gynecological office should use thigh stirrups. Very comfy.

If you’ve been through the fertility process, you may have experienced an HSG. The purpose is to flush dye through your fallopian tubes to ensure everything runs smoothly, and if you’re an endo patient, to clear out any dried blood which could be getting in the way of egg meeting sperm. I was warned of mild cramping, but guess what? That dye is going to bust through any blockages and cause intense pain for hours.  I got in my car and even though I live ten minutes away, I wondered, “Am I going to make it?”  I cancelled work (why I don’t have a real job) and needed to use even more Tramadol than usual.

My results: a right blockage was removed and the left fallopian tube is permanently blocked (most likely due to scar tissue where my organs were fusing together). Preserving fertility is one reason why it’s so important to diagnose endo early and see a specialist. As always: stop ignoring women’s pain!

My working tube has a new 2 cm cyst (which can occur post-surgery and resolve itself), but for now it is pulling down the ovary, making it more difficult for eggs to travel. There’s also a low follicular count which can be helped with Clomid.