My People

My People
My matched set of grandchildren - Oliver and Cosette

Tuesday, July 21, 2015

Finally A Diagnosis for the EVIL Gut Pain!

Approximately two years ago I started having recurring abdominal pain, commonly referred to here as "Evil Gut Pain". For awhile, other than mentioning it to my pain doctor, I had no way to get a diagnosis for this pain. This happens for people without "affordable health care". In states (like mine) that didn't expand Medicaid, some people (like me) just have to do the best they can to deal with the great medical unknown. Obamacare is about as helpful as unicorn farts in my world.

Despite having access to medical care through a local charity - Caring Hands Clinic - if you're looking for a charity to donate money to, these people do a lot of good for a lot of people who fall in the cracks of medical care in our county - the clinic is not set up to diagnose illness. They treat chronic illnesses such as diabetes or high blood pressure. They weren't able to do much for my Evil Gut Pain but they set me up for an ultrasound through the local hospital system to possibly get
a diagnosis.

You might remember somewhere around this post here, back in February, I found out that I was approved for charity care through the hospital system. This meant that I had a clear path to a diagnosis of the Evil Gut Pain. Clear, easy, concise, affordable... with my awesome Primary Care Doctor (who is covered under the charity care) acting as "contractor" I  would know exactly what it was in a very short time... but.... not. Sidebar: reading through those old whiny posts I wondered, "how in the world do people stand reading my blog? I'm a whiny mess!".

Gradually, through a long process that included an ultrasound, xrays, an MRI and a CT scan, we have eliminated all the big, hairy, scary problems that might be causing me pain. With every test I would be delighted, of course, that there weren't any big, hairy, scary problems but really frustrated to not know why the pain is so bad at certain times. The one really consistent factor with the pain was that it was cyclical, at it's worst at times that coincided with the normal monthly woman stuff. Due to an endometrial ablation in 2008, I don't have a normal monthly thing happening but I do ovulate and have the normal PMS headaches and such so even though it's not normal, it's MY normal and the pain was happening at those particular times.

My awesome Primary Care Doctor decided we should do the full workup with a GYN so he referred me to a guy who was also in his medical system (and therefore covered under charity care). I saw that doctor in June. Even though I had already had an ultrasound (that was terribly inconclusive) he wanted me to go to his main office and have an ultrasound done by his ultrasound tech, who he had great faith in... not that the other ultrasound wasn't GOOD but he had a few specific things he suspected and wanted to have his tech check for those.

The thing about me and pain is that I detest leaving the house, ever. I am either already in pain or anxious that pain will start while I'm out and about so I just stay where I'm most comfortable, in my nest in the Whine Cellar. For that reason I drug my heels about scheduling the appointment at his main office because that meant me having to go somewhere.

I went today and had another ultrasound that was breathtaking painful but conclusive. As he suspected, there is a complication from the endometrial ablation I had in 2008. Basically, without pushing the TMI factor too high, the ablation scars the inside of the uterus so that the usual lining that accumulates every month in preparation for a potential baby, doesn't accumulate. The lining doesn't build up so there's no period to get rid of the lining.

 What has happened in my case, there is a spot where the ablation didn't scar the uterus enough to stop the lining from building up but the scarring from the rest of the ablation doesn't allow it to come out. This has created a pocket of fluid that increases and decreases depending on what time of the month it is for me. It's this pocket of fluid that is causing the pain. When I had the first ultrasound it was at a point where the pocket was not full so it appeared as a ovarian cyst. Today it's fuller which - bad news, it hurts - but good news, they could tell what it was.

There are two ways to cure this problem - a hysterectomy or menopause. The size of the pocket is not large enough for my GYN to get charity care (or most insurance companies, as it turns out) to approve a hysterectomy. They typically just treat it with pain meds for the days that it is particularly painful until such time that the pain gets too great to handle. Since I already have a narcotic agreement with a pain doctor, the Gyn will defer to him to handle the pain management on this condition.

The main thing is... I know what it is and don't have to fear something potentially fatal (and I did there for awhile!) The GYN completely validated that this problem IS painful (as opposed to my previous diagnosis of "chronic constipation", which I'm sure is painful but not taken too seriously, I'm afraid) There's a treatment plan in place and I now know how to handle the Evil Gut Pain when it happens. AND it's one more legitimate cause of chronic pain that will help my disability case as it could/would keep me out of work for several days a month in addition to the days that I would be sidelined by migraines or back pain or fibromyalgia pain and exhaustion.

Insert many happy, celebration emojis.

Love and hugs, y'all!


monique said...

I'm sure it is extremely painful but it could be so much worse.
You have to be relieved to finally have an answer. Thank God.
Good luck with getting the proper pain meds that you need to help you deal with this.
This should definitely help your SSI case. Anything you have to live with is valuable for your case records.
Your whining isn't a bad thing. I get it. You have this blog
for you and there is so much info that is documented right here
for your records.
Have a great day!

Anonymous said...

So happy you got answers, Heather! Must have felt like you were losing your mind, not to mention having some unknown AWFUL thing. Too bad you can't opt for the thing that ever happened to me (I had a partial at 38, menopause started at 48 - best 10 years of my life, no periods and no chance of pregnancy!). As you said, though, at least KNOWING what the problem is helps....

Take care,

Janis said...

Glad you have some answers! Praying the medications are able to help reduce the pain.!