The Devil Inside

The year that Jeremiah and Miles died, 2007, I felt like I'd been run over by a truck.  For the last few years I feel like I'm getting whacked in the head repeatedly with a 2 x 4.  I get hit by bad news followed by more bad news followed by even more bad news.  It's better than being hit by a truck, but can't I get a break? 

Last Friday was my ultrasound to check the status of my evil twin cysts.  I went into it knowing I probably would not get great news (I've had a lot of pain the last few days - that's a bad sign) but I didn't expect to get hit with horrible news either.  That's what I got though, and I'm still reeling from the blow.

One cyst is resolving and is now 1.5 cm compared to 3.5 cm three weeks ago.  OK that part's good, but wait for it . . . The other diabolical cyst remains 3.5 cm and my doctor thinks it is an endometrioma.  If so, then the only way to get rid of it is surgery, which she strongly discourages.  She recommends proceeding with IVF anyway and she will try to work around it.  The cyst is likely to have a negative effect on follicle production.  I only got 6 mature eggs with my recent cyst-free IVF and just two embryos made it to transfer.  I don't feel very hopeful about my prospects with yet another handicap on top of all my other crippling handicaps.

Regardless of whether I proceed with IVF or not, one thing is certain - I will continue to face a lot of pain in my future.  What can I do but plow ahead as long as there's any hope of obtaining great joy to go along with that pain?  So I'm off The Pill for a few days and then will start back up and head into another long Lupron IVF cycle.  IF this all goes off according to plan [laughs bitterly] then stimulation meds would begin in early November, with retrieval right around my 35th birthday.

D'oh!

I had planned on April being a pain-free and doctor-free month. Stress-free would have been nice, too, but that's impossible with hubby's job situation. Nevertheless, I was determined to have a wonderful time just enjoying my husband and kids and not thinking about past traumas and the uncertain future. Time to enjoy now. I got a couple of pain-free weeks of full functionality and it was wonderful! I got my house cleaned, had lots of fun with the kids, and even met up with two other bloggers (Baby on Mind and The Elusive Embryo) for lunch.

But I just can't stay away from those stirrups! I had a"routine" exam and Pap smear as a prerequisite for IVF just in case that works out. When I made the appointment I was shocked to hear myself say "just a routine checkup". I can't remember the last time I used that phrase. The very next day I started having a familiar kind of pain, which I mentioned to the doctor later that week at the exam. The Groping Method revealed nothing and I went on my merry way hoping the pain would just go away. After all, I've been on the pill continuously since the last cycle's failure. That's supposed to help prevent cysts, right? Why else would I take The Pill and throw away even an infinitesimal chance of getting an infant the old-fashioned way?

The pain seemed to subside until the next week when I was driving home from an IVF consult. My defiant ovary misbehaves every time I even dare think about making it produce eggs! So back to the gyno, where I successfully argued my way out of another Groping and instead went straight for the ultrasound. Guess what? Another cyst!! This one is smallish at 3 cm and only causes intermittent pain unlike the last few whoppers that caused constant pain for months. So that's a good thing. Also, since there are no immediate plans for going off the Pill, it's not currently screwing up any TTC efforts. Also good. But the whole purpose of being on The Pill (which is horribly depressing when I want nothing more than a baby) is to prevent cysts.

I fear for my sanity if there's no stopping these suckers from forming. Last year I spent seven months in pain! This is no way to live! Has anyone else out there had so much trouble with cysts, even on the Pill? If only I could grow babies as well as I can grow cysts . . .

I'm so angry that my body is constantly sabotaging all my efforts just enjoy the good things I do have. Grrr...Maybe May can be pain-free and doctor-free.

In Suspense

Christmas, happily, has passed without any major life-altering tragedy occurring and my kids had a very nice Christmas, as they've once again been spoiled by Grandma. Despite all the horrors of Christmases recently passed, I am proud of the fact that my children have only happy Christmas memories. Hubby and I do make it a point to shield them as best we can from our own distressing issues.

Currently, I'm in horrible suspense due to an ultrasound that will take place this coming Thursday to check on the status of my suicidal cyst-producing ovary. It has produced multiple large painful cysts in the past year, resulting in 8 months spent on the cursed pill. The latest bout of it has lasted three months so far. Luckily, it's rarely intense pain and I can go through the motions of a normal life, though admittedly not in a normal state of mind. It's the seeming endlessness of it and the fact that I can't even try for a desperately wanted pregnancy that drives me to the brink of insanity. And, let's face it, three months of constant pain can turn even the nicest girl into quite the bitch at times.

So... you can imagine my relief when the pain became less intense and frequent after last month's scan. Just prior to Christmas I had several painless days, during which I was in pretty high spirits and began to hope that this upcoming appointment would show me to be CYST-FREE, thus clearing the way for this chronic drug-user to switch from this:

To this!

Now, however, I am a nervous wreck. The last few days the pain has been back. Currently it is just a subtle intermittent ache, but I can't let myself be stupid enough to hope for good news. Best to avoid ups and downs by just staying so far down that there's really nowhere to go but up! That's some seriously messed up thinking, I know, but sound logic in a really twisted way!

Before I close this rant, I would like to thank Barrenblog for providing hubby and I a much-needed, though unavoidably bitter laugh with her post of several months ago entitled Operation Turkey Baster. We could relate to it all too well thanks to many similarly dismal attempts, including one disaster eerily similar to hers. Oh, the desperate things we do... if we couldn't laugh we'd just sit here and cry our eyes out.

Annie's Sound Advice:  NEVER buy a turkey baster from a garage sale.  You don't know where it's been.

Doctor Dammit

When you're just fed up with doctors
Who don't listen, care, or try
And pain has made you go insane,
Lose your cool and cry.

When every doctor's clueless
And your future is in doubt
Then here's a little dammit doll
That you can't do without.

Just grasp it firmly by the legs
And find a place to slam it.
And as you whack the stuffing out,
Yell "Dammit, dammit, dammit!"

If "dammit"s not a word you say
Then wring its little neck
As as you rip its head off
Shout "Oh heck, oh heck, oh heck!"

You may have gathered that I'm a bit frustrated with doctors. Yesterday was yet another disheartening visit to check the status of my "functional" cyst, which measured 6 cm last month and just under 5 cm this time. By the way, the five weeks between these two appointments is the longest I've gone without a doctor appointment in 3 YEARS! I wish I could have enjoyed it more, but I was in pain more often than not.

No doctor has ever had anything more useful to say about these frequent painful cysts than "Huh. I dunno". So very little is known about functional cysts that there's no effective means of preventing or even treating them. To make matters worse, my other issues - endometriosis with resultant infertility and recurrent pregnancy loss - also leave doctors stumped. There just isn't enough known about these conditions (why they happen, how they work, how to treat or prevent them) for doctors to be of much help to me, even if they tried.

Endometriosis has long been recognized as a serious disease in women, and yet there is still so much about it that is unknown. Certainly progress has been made, but you'd think it would get more attention and research given the fact that 10-15% of women suffer from it.

Imagine that 10-15% of men suffered from a painful, chronic, and progressive disease of the reproductive system. Imagine that the drugs to treat it made them hormonal basket cases and killed their sex lives. Imagine that the disease would often lead to multiple surgeries and the lopping off of a testicle or two just for starters. I suspect that enormous amounts of money would be devoted to the cause. The best and brightest in the field of medicine would be on the case. The road would be long but they would act swiftly and boldly to find effective treatments and ultimately, a cure.

Great advancements would have been made by now if men suffered this way. Instead, women are still being dismissed and patronized when they talk to their doctors about the pain they are suffering. And there's no hope for a cure any time soon. Dammit, dammit, dammit !

Something's Always Wrong

Now that I'm cleared to try injectable fertility meds, I'm anxious to get started. I just need a cyst-free ovary! I've had pain, though, and gone on the pill. Thought I'd better get it checked out, so today was the first time I've been to my new gyno since the initial consult. I was pleased that my situation was handled expeditiously, in stark contrast to how things were managed at the last office. Got the exam, ultrasound, results, and recommendation all in less than an hour's time.

I had hope going in because there has been almost no pain at all for three days. A good sign! And the doctor said he couldn't feel anything amiss. Another good sign! Then came the just-in-case ultrasound and hope was crushed once again. Surprise! Another cyst - this one a whopping 6 cm, and it looks like it may have sprung a leak. The doctor said to stay on the pill continuously for another 6 weeks and then we'll check on it.

Now I'm a nervous, paranoid wreck. What if it twists or ruptures? I don't dare to go running, which is a serious loss because the endorphin high is all that keeps me going sometimes. And being on the pill just KILLS me. How can this nightmare ever end happily when we so rarely even get a try at pregnancy? Also, I'm sorry to admit that being in pain so much of the time makes it really hard to be a nice person.

In order to ease my pain (and his) hubby recently purchased the Hitachi Magic Wand Massager and it is gooood. I put it on my belly and it temporarily kills the pain. 

Curses!! Foiled Again!

Once again, my plans have gone awry. About the only thing I can plan on anymore is that I can't plan on anything! Due to uncharacteristically long-lasting pain, I am forced to give up on the "natural" cycle + Ovidrel idea. I called the clinic a couple of days ago to ask if it was too late to start the Pill. It wasn't, and either because of the Pill or by coincidence, in two hour's time the pain disappeared almost completely. To the great joy of hubby and children, I am a nicer person now than I was earlier this week. But I'm still VERY upset at my renegade ovary!

That ovary has done nothing but cause trouble since its partner was removed during laparoscopic surgery nearly two years ago. Prior to that, it had never developed a single cyst, never caused a moment's pain, or made trouble of any kind. It looked like the ideal candidate for increased responsibility. Big mistake.

Evidently, it resents having to do the job of two ovaries. Despite the fact that I've given it several extended vacations (on the Pill) it still exhibits a very defiant attitude and suicidal tendencies. It requires constant supervision and the encouragement of powerful drugs just to maintain a minimal level of function. I keep having to use harsher methods to bring it under control, alternately using the Pill and hyperstimulation drugs.

Still, dealing with the pain, infertility, and other trouble is vastly preferable to the alternative of losing it, which would cause sterility, higher risk of heart disease and osteoporosis, pain, depression, and instant menopause complete with hot flashes, mood swings, etc. So I will continue plying it with drugs and praising it incessantly when it actually produces decent follicles without producing cysts.

In other news, our consultation with the RE got moved up to tomorrow instead of the end of the month! We'll see what the game plan is after that.

Another Try...

After four months of recurring ovarian cysts, near-constant pain, and constant stress, I finally had a clean ultrasound in July. Unfortunately, it was too late in the cycle to start Clomid, so I had to wait for a new cycle to begin in August. By that time (of course!) a new cyst had formed, but measured only 1.5 cm at baseline ultrasound, so Clomid was still a go.

This is treatment cycle #3 for us, with each cycle being exponentially more stressful than the last. I don't know how much more hubby and I can take. This cycle has been absolutely brutal, for reasons I won't go into here. Because this is our third try, we won't be allowed to try many more times if this is unsuccessful. We're definitely feeling the pressure, because it's now (or very soon) or never. We simply can't justify going further down the fertility treatment road. The next stop would be injectables, which seriously increase the possibility of twins or higher order multiples. While we would welcome two or more babies, the fact is that any pregnancy we manage to conceive is already very high-risk. If we got pregnant with twins and even one had the umbilical cord problem, they would almost certainly both die because the dead one would poison the environment and kill the other one before it reached viability. If, as we expect, the odds of survival for a singleton are 50/50, then the odds of having twins survive is only 25%. We don't want to go there.

Likewise, it doesn't make sense to risk IVF not only because it's astronomically expensive and could result in twins, but also because it just seems to be going too far if my odds of carrying to viability are only 50/50. Since I did get pregnant very briefly on Clomid try #1 and we still have insurance coverage, it makes sense to exhaust the Clomid option and then reassess the situation if it doesn't work.

So this cycle there were 3 mature-sized follicles as well as 3 small ones at follow-up ultrasound. This is promising news. That evening I did the Ovidrel shot (even though I know it does't hurt, I still hesitate with that needle) which set off two days of painful bloating and hopefully ovulation. The IUI was done 42 hours later and it was absolute misery. It was also too late I think. This is really NOT promising. Now we're in the midst of the nerve-wracking two-week wait for the pregnancy test.

Even More Bad News

The results are in from yet another ultrasound (it's been a very stressful week-long wait!) and despite being on the pill for a month now, my cyst has more than doubled in size, from 2 cm last month to 4.5 cm now, and has gotten quite painful. This probably means at least a few more months of waiting, which may not seem like a big deal, but my wait has been going on for three years now. I desperately want this whole issue to be resolved somehow, rather than dragging on and on with depressing news followed by still more depressing news. If the cyst grows much bigger, surgery may have to be considered . Again!! I'm still sore from the last one - and that was more than a year ago!

Since losing my babies the weeks have turned to months and the months to years, and almost all of it has been spent waiting - waiting for lab results, pathology reports, surgery, cysts, referral to an infertility clinic, cysts, and more cysts. Last year when I had an HSG test (where they inject radioactive dye through the cervix and then do an Xray to see if the fallopian tube(s) are still open) I was almost wishing my one remaining tube would be closed, because then hope could die once and for all instead of dying so painfully, inch by inch.

If this story does miraculously end happily, then all this hell will be worthwhile. But if not, I wish the senseless pain would end. All it does is compound the already substantial damage to my day-to-day functionality, faith, family, and friendships, and prevent any sort of "closure" or healing.

More Bad News. Is There Any Other Kind?

I had hoped to start a new cycle on medication today, but instead got more bad news. The ultrasound showed a pretty big cyst on my only ovary. It's not a huge shock, since I've been having pain for the last few weeks. Looks like I'll have to be on the pill for awhile in hopes of having a clean ultrasound next time.

This is exactly the situation that happened last April. We had finally gotten up the courage to try again for a pregnancy, but I got a cyst and had to go on the pill. Being on the pill while wanting desperately to get pregnant is just adding depression on top of scary severe depression. And it really doesn't help the situation that my already messed up hormones are constantly being manipulated with all kinds of drugs.