Saturday, August 31, 2013

Hydrosalpinx?!

Let me backtrack a bit...
  • In early July I found out I had two cysts (one large on the right and one small on the left).  
  • Last month I had one cyst (probably the large one getting smaller).  
  • This month I have a small cyst on the right (the large cyst STILL isn't gone) AND a few smaller ones on the left side.
No bueno.  I was not happy when I left the ultrasound but wasn't too upset about it.  I was just a little frustrated that the cyst wasn't gone and that it looked like there were more small cysts.  I just don't understand.  I have never had problems with cysts before - even when I was taking clomid. 

I wasn't too concerned about the small cysts at the time because it was possible that they were antral follicles.  Antral follicles are small follicles (about 2-8 mm in diameter) that are 'on deck'.  They are the follicles that are waiting their turn to become a dominate follicle.  Sometimes these follicles can look like cysts on an ultrasound so I was not concerned.

This was not the greatest news but still isn't the worst news I received at my CD3 ultrasound.  The other information the nurse told me in a followup phone call with the results - I have fluid in my fallopian tube by the cyst and more endometrial lining than I ought to on CD3 "So we are going to have to skip this cycle.  I am going to have your doctor look at these results and schedule you an appointment so he can talk to you about this"

Wait, what? 

"What was the name you used for the cyst again?" I asked. 

She said "It isn't a cyst.  It is fluid in your fallopian tube.  It's called hydrosalpinx"

"Umm, ok" Clearly I had no idea what this all meant but knew it couldn't be good if I now have to see the doctor.

I scheduled an appointment for Wednesday and then went back to work for a minute before Dr. Google began begging me to look into this fluid situation.

What I found was frightening.  

If you google 'fluid in fallopian tube' the only thing you get is "hydrosalpinx" so that HAD to be what the nurse said over the phone.

Here is a nice summary I found at the top of the search results:
http://www.pacificfertilitycenter.com/infertility-diagnosis/hydrosalpinx

According to the website:
A hydrosalpinx is the medical name for a fallopian tube that has become filled with fluid due to injury or infection.  
Injury or infection?  How did I injury it?  I haven't had an infection either.  WTF.

Hydrosalpinx usually affects both fallopian tubes, (even when only one tube is affected, there is usually some residual damage to the other)
Oh great.  Just great.

Hydrosalpinges (when both tubes are affected) is a very severe form of tubal damage and pregnancy is usually only achieved with In Vitro Fertilization.
Wait, what?!
Cue the tears.  There was no stopping the internet searches now.  I had to keep looking into this.  Could I really be forced into IVF because of this stupid fluid?

Hydrosalpinx commonly results from a long-untreated infection in the fallopian tubes. A number of situations may lead to fallopian tube infection, including:
  • The residual effects of a prior sexually transmitted disease such as chlamydia or gonorrhea
  • Prior ruptured appendix
  • Excessive tissue buildup due to endometriosis
None of the above applies to me.  I've never had an STD - I've been tested throughout the years.  My appendix is fine and to my knowledge I don't have endometriosis.  This doesn't make sense.  Was it the IUI, the progesterone suppositories, the uterine polyp removal surgery?  I have lost track of the number of transvaginal ultrasounds I have had- its been so many.  Could it be from that?  How is this possible?

The inflammation and healing process resulting from such infection destroys the delicate finger-like fimbria, which extend from the end of the fallopian tube to the ovary. Fimbria are responsible for carrying the egg to waiting sperm and moving egg and sperm together for fertilization.
Wonderful.  That's not good.  That's really bad.

When injured, fimbria become fused together, thus closing off the tubes. Fluid then collects in the fallopian tubes, making it impossible for them to function.
Fused together.  Seriously.  Could this get any worse? 

In some cases, especially where the hydrosalpinx is small, this type of blockage can be repaired, allowing pregnancy to occur naturally.... A laparoscope is surgically inserted into the abdomen and an incision is made to open the blocked fallopian tube. Recovery from this procedure is relatively rapid and normal activity may be resumed within a few days. 
Oh good, MORE surgery.  REAL surgery.  Through my freaking belly button.

Because ovarian health and egg quality decline after the age of 35, reversal surgery is more viable for younger patients who can afford the additional wait time. 
hmmm, I'm 33, 34 in 4 months.  What is this additional wait time?  A couple of months?

Patients conceiving after tubal surgery must be monitored very closely for a possible ectopic pregnancy.
OMFG. It just got worse.  The fertilized egg may get stuck in there now?  Seriously.  I have enough problems with the recurrent miscarriage worries and concerns.  Now I have to worry about an ectopic?  sigh.

Because of the low chances of success with attempts at surgical reconstruction of the tubes (some studies have shown a 10% pregnancy rate in the year following neosalpingostomy for hydrosalpinges), and because of the increased risk of ectopic pregnancy, most women experiencing significant tubal damage are advised to move directly to IVF.

The final nail in the coffin.  A YEAR?!  Increased risk of ectopic and a 10% pregnancy rate. IVF it must be then.

In order to increase IVF success and a healthy pregnancy, it may be recommended that the damaged portion of the fallopian tube be removed entirely before treatment, as in some cases, fertility enhancing drugs may have the adverse effect of causing fluid buildup in the fallopian tubes. Blocked, fluid-filled tubes also can leak into the uterus, posing a risk of infection after embryo transfer.
Stick a fork in me - I'm done.  This is no quick fix.  Another disappointment another delay.  I'm no closer to holding a baby in my arms as I was 27 months ago when all of this began.

With that bombshell I had to leave work.  Once knowing this possible diagnosis I could not focus on anything else.  Thank goodness the nurse waited until the end of the day to call me back so I could work a little longer.

I am devastated.  I am heartbroken.  I am mad.  I am let down - yet again.  I cried on and off all night and didn't get much sleep.  I am in mourning.  I am mourning the loss of my fallopian tubes before they are even gone.  Let's get rid of them.  NOW!

This is so hard.  Never did I imagine it would be half this hard to have a baby.  Never did I think it would get this bad either.  No tubes now?  No possibility of having a baby naturally again.  No unplanned surprise baby.  No luck.

I realize that I am not yet diagnosed with this condition.  I know that.  My husband hates that I do this.  He hates that I am diagnosing myself.  He the optimist, I am the pessimist. 

I like to be prepared.  I like to know what I am up against.  I'd like to go into my appointment informed.  I also want to prepare myself so I do not fall apart when the doctor delivers the unpleasant news. 

This doesn't mean I cannot have a baby.  It's just another obstacle to overcome.  Another step to take.  I haven't gotten this far by being a wallflower in this path to parenthood.  I am an empower patient that has become my own advocate.  That is my biggest lesson thus far.  SPEAK UP.  DON'T LET THE DOCTOR WALK ALL OVER YOU.  If your gut tells you something is wrong than listen!

I am incredibly lucky in one regard.  My state requires insurance companies to have fertility coverage.  I can have IVF.  I have excellent insurance.  This is not the end of the road for me.  I may be taking the scenic route even though I started out on the highway but I WILL make it to my destination.

I am already thinking ahead...
1.  Doctor's Appointment                                                 September 4
2.  HSG to confirm the hydrosalpinx diagnosis               September 10 (CD 14)
3.  laparoscopic salpingectomy (removing the tubes)     October 17 (in a dream world)
4.  Recovery                                                                    October - November
5.  IVF                                                                             December (fingers crossed)
6.  Baby :)                                                                        September, 2014

Rainshower: My tubes aren't looking too good right now
Rainbow:      It's 2013.  I don't need tubes to get pregnant (although it is much easier if you do).















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