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!

Tuesday, May 20, 2008

If I had a tail, I'm chasing it....

So, I finally called my OBGYN yesterday to let him know about my persistent nausea. He called back today, and, he is writing this off as possible GI issues. Really? Are you for real? Have you not noticed ANY connection between my GI and GYN issues lately? He said that maybe, possibly, it could be the progesterone. That doesn't make much sense to me-I've been on it for 2 months straight now...why would that be causing the "ill feelings" I've felt in the past 3 weeks. If he wants to chalk it up to side effects, I'd say it's the Lupron. But, I dunno. I've felt this way before...this is a familiar ill. This is not uncharted territory. So, I'll appease the Dr. and lay off the add back for the next few days. I have an appointment with him (not just a nurse) for this possible last shot. I'm not making any decisions about continuing until mid way through #3. Anyway, if his add back therapy theory doesn't pan out, I'll make sure he listens to me next Thursday. Who knows me best? I do, and I am not right in the pelvic area somewhere...and I don't think the GI is going to be able to do anything about it. So, do I just demand an ultrasound for peace of mind on my theory (a cyst)? What would you do? I hate this round and round. I mean, maybe there is some GI issues going on (my stomach also "burns" right below after meals, when I feel like eating)...but, they've always been tied to the GYN. I just have a hard time grasping all of this. I was almost in tears after I got off the phone today...sometimes I just feel like I am talking, and no one hears me.

Thanks for letting me vent. I think I needed it today.


Deb said...

I'm so sorry that you've been getting the run around. There's nothing more frustrating than knowing something is wrong, but not getting anyone to help you. I've been there and continue to be "blown off" on certain issues.

In fact, when I was complaining of my symptoms, my doc kept telling me that I was having "anxiety issues." After we finally got to the bottom of it and after they removed a tennis ball-sized cyst from my ovary (which had adhered to my intestines), my doc apologized to me because (in her words) "you were really sick and I'm sorry you had to wait so long to get the surgery."

Tell me again ... have you had surgery to remove a cyst? My nausea was at its worst before my large cyst was removed. (I didn't have burning or anything ... just a general feeling of sickness.) So, from my perspective, I'd keep pushing until your doc does everything possible.

And emotionally I was a wreck during that figuring things out stage. I've been meaning to respond to your last post about anxiety meds ... My doc did put me on 10 mg of Lexapro before they finally realized my endo was out of control. For me, I didn't get "emotionally better" until after my surgery. Currently I'm taking 5 mg a day (10 mg was too much for me and made me feel out of it) because my doc said anxiety really exasperates endo. In general, I'm feeling better and a little more "leveled out." I credit much of this to the surgery and the Lupron ... but the med may be helping a bit, too.

My internist told me that as an endo patient, the best thing we can do is advocate for ourselves. Doing an ultrasound is quick, fairly painless and will at least answer the "is it?" question. I'd advocate for that if your symptoms don't go away.

Hang in there! Please know I'm here, to listen and understand. All of what we deal with is often beyond words and so hard to articulate. Sure hope things turn around for you.

Deb said...

Sorry ... I'm going to comment some more.

When I was at my worst, food did nothing for me. I'd eat and feel sick. Nothing tasted good. In the process, I lost about 15 pounds. I'm convinced that there is such a correlation between GI health/appetite and endo. Yet, doctors don't acknowledge this or act like it's a symptom.

My sister gave me the book, "Endometriosis: A Key to Healing and Fertility Through Nutrition" by Dian Shepperson Mills and Michael Vernon. I think it's a worthwhile read ... not only for its nutritional advice but also for the personal stories about other women suffering from endo. Their voices helped me realize that 1) I'm not crazy; 2) Endo really does affect so many areas of our health; and 3) I have to articulate to my doc how crummy I feel and how I need her help to make me be the best I can be.

My Endo Journey said...

Thanks for the support Deb!

Yes, they removed an endometrioma on my right ovary-it was about 3-4 inches-during my surgery back in Feb. They cut out as much as the cyst wall as he could...but, I know they come back. I just know this is how I was feeling back in October...how could I not think they were related? How could HE not think things were related. Even after it's hanging all over my colon...no relation? Give me a break.

Anyway, so, I will tell him on Thursday I want an ultrasound-for my peace of mind. It's my right as a patient (right?)! It should be anyway.

I lost about 10-15 pounds before my surgery as well. They are definitely connected-our body relates one system to another-it has to to function!

I think I have that book...I ordered a few books before my surgery. I'm terrible about follow-through with reading (add? Haha!), but, I'll get it out and dig in.

I'm not scared to take anxiety meds...but my MD wanted me to be on an anti/depressant/anxiety med-I didn't want that. A few years ago I took Buspar and loved it-it didn't make me feel out of sorts. Perhaps I will make another request from someone for that. I'm changing internists, so, I'll make that request at the new place.

Thanks again Deb for sharing and the support!

Anonymous said...

So sorry you are feeling like this. It stinks. :-(

It could be a cyst, though. I know I've felt like that and had cysts. Nasty ones. Couldn't eat, would throw up. But it could also be the Lupron. Never been on it, though, so can't be sure. But my GYN wouldn't put me on it because I'm too sensitive to hormones.

Hope you get feeling better. You have to take the bull by the horn with these doctors. They think they are Gods. It's your body. You are the boss. Tell them you want an u/s and don't leave until you get one.