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!

Sunday, August 3, 2008

Did the Lupron even work?!

With my recent flare up with my colon symptoms, I'm left pondering, did this sh*t even work?!? I know I "only" took 4 months...but, I should be getting at least that much of treatment relief from it, right? The colon stuff even started BEFORE I stopped. I had to breakdown yesterday a little from my frustrations. I really don't think my Dr.'s know what to do about the symptoms. I've been on the miralax since Thursday-it really hasn't seemed to work yet. This AM I woke up with an "icky" stomach ache; it hurts all the way up to my esophagus! I have been eating pretty well, drinking tons of water....I don't know what else to do. I'm giving the miralax until Tuesday-then I'm calling up the GI. I don't know why...he'll just be stumped. I think he's a great Dr., but, the endo stuff I think throws him off.

Could colon "issues" be causing reprecussions all the way up into my upper stomach?!? I guess maybe he was right about it all possibly being related to the endo (I thought he was just saying that because he couldn't find any other concrete evidence while in there with the EGD).


Duck2 said...

eeekkk. I did syneral (lupron) for 1 year, 6months longer then the recommended dose and it did NOTHING to help my endo at all. Some it works for and some it doesn't.
Sorry to hear you're in pain (have you tried diet changes?). I never thought I would feel better but, with serious change of diet, and on the continuous BCP I feel pretty good.
Take care

My Endo Journey said...

What have you done duck? I've vut out caffiene pretty much (except today); I've gone mostly organic dairy and meats; trying to stay away from processed stuff...

Anonymous said...

Aw, I hope it get's better for you soon. What sucks about that stuff is that it's never gauranteed to work or not. When I was pondering between risking the Lupron or having a hysterectomy, my dr. told me to remember there were no gaurantees it would work. And no gaurantees for how long I would have relief. I just wasn't up for that.

Jeanne said...

I have just a moment for a quick comment since I should have been asleep long ago...

A friend of mine who has endometriosis also has constipation problems.

She also has what is called "leaky gut syndrome", a poorly understood condition that basically means you have to be on a very careful diet! (Kind of hard to get into too much detail at this moment)... but I'm sure you can Google it...

Anyway, have you tried looking into nutritional changes that might help?? Have you tried keeping a symptom journal that might reveal any offending foods??

Have you tried a rotation diet (for allergy pinpointing)? This is NOT a "diet" for weight loss. This is a special diet to pinpoint any food allergies that could be causing trouble. Endo and food allergies can often go hand in hand!

My problem is the opposite. What I mean is that I have IBS and have had diarrhea since the early 1990s. Three colonoscopies later (plus having had a foot of my colon removed for a "malrotated colon"/paraduodenal hernia), the diarrhea is still a problem.

The diarrhea is definitely worse at period time and definitely tied to endo in my mind!

Anyway, my experience is that gastroenterologists and colorectal surgeons simply aren't typically well-trained (if at all) in endometriosis!! Heck there are gynecologists who don't really understand the complexities of endometriosis!

You may want to investigate alternative medicine/holistic medicine/integrative medicine options...

Just be careful because your GI system sounds pretty sensitive!!

Popping herbs and supplements like crazy can be just as much trouble as prescriptions can be or as endo can be to your GI tract! You are clearly very sensitive. So proceed cautiously.

If your GI problems started with an antibiotic, that is a HUGE clue!!! (I'm not seeing the antibiotics mentioned on this exact post but I swear I read something about antibiotics on your blog earlier today as I was flying out the door)... I think!

OK. First, let me say that I'm not a medical provider and this is not medical advice. That said... your intestinal flora may have gotten upset by the antibiotic!! This is very common... though your case seems more extreme than some.

Antibiotics kill "bad bacteria" BUT they also kill "good bacteria". They can't differentiate the good from the bad. This is why GI symptoms are so common when on antibiotics.

Are you familiar with probiotics? After a course of antibiotics I always take a supplement with acidophilus/lactobacillus (or bifidus).

This is the "good bacteria" found in live/active cultures in yogurt. Only you'd have to eat an awful lot of yogurt to get as much probiotics as you probably need!!

The cool things with my acidophilus is that it comes in capsules. Soooo, if you are super-sensitive (which it sounds like you are!) you don't even have to swallow the capsule. (You may not even be able to tolerate the gelatin capsules).

No problem... Just open the capsule and sprinkle the contents on your food. (Follow directions on container for dosage directions as there are many types of probiotics).

I get the kind that need to be kept in the fridge. They are awesome! They help with all sorts of things. Constipation and diarrhea may seem like opposites but really they are both imbalances in how much water is being absorbed in the digestive process.

Soooo, you can try going to your local health food store to see what probiotics they have available.

The big clue in your case is that these problems started after antibiotics! That is a HUGE clue!

Also, drinking water is clearly a good thing! Just be aware that it is possible to overdo a even a good thing. For example, the more water you drink at mealtime, the more diluted your stomach juices get. The more diluted they get, the less effectively they are able to properly digest your food.

So, while water is the best thing you can drink and drinking enough of it is very important... it is possible to overdo even water.

I don't know how much you're drinking. Check with your doctor about how much he/she suggests in your case!

I cannot tell you how useful probiotics are!!

Please read my post: "Wednesday, June 4, 2008 Alternative Medicine Is Amazing!"...

I highly recommend the book mentioned there: "The Yeast Connection" by Dr. William Crook.

It may help you make sense of what is happening to you!!

Good luck and keep in touch!! :)


Kstan said...

I've just visited your site for the first time today and wanted to share my experience with you. I was diagnosed with endometriosis and PCOS 10 years ago. I've been through 7 laporoscopies, the latest one was June 23. I took my first 3-month Lupron injection on July 10 and exactly one week after the injection I started experiencing what I thought was severe chest pain. I had read that chest pain was a potential side effect of the Lupron so I made an appointment with my GYN. She said everything looked fine and referred me to a GI. After 6 weeks of testing (including blood tests for bacteria, ultrasound, and upper endoscopy) a HIDAscan finally revealed that my gall bladder is not functioning properly. I have been convinced that the Lupron caused the problem. However, most of the docs involved have disagreed. They have all indicated that the gall bladder disease was likely pre-existing and that the surge of hormones with the Lupron combined with my weight loss (I started the endometriosis diet right after my laporoscopy and have to date lost 35 lbs) acted as a catalyst with the disease. Apparently high levels of estrogen over time can be factor in gall bladder disease (which the endo and PSOS have caused). I'm meeting with a surgeon on Thursday to discuss taking out the gall bladder. While they're in there I'm having them do a full abdominal cavity search for endo. I'm convinced that each of my conditions is linked. I read other people's experiences constantly in hopes that something sparks an explanation for me. Hopefully this might spark something for you.

rachel said...

You MUST cut all wheat and dairy, just try it for two months, but you can't touch anything with wheat or dairy, wheat is generally the worst culprit but for me dairy sets the pain off too. Nothing else worked, this did.

Michelle said...

I also have severe endometriosis; have had 5 surgeries, 3 rounds of lupron, 3 tries at infertility drugs...etc. Recently, my Dr. (who specializes in IVF and endometriosis) had me try vaginal danazol. It has been incredible! Not many Drs have ever even heard of it used this way. The first few weeks hurt as it "kills" all of the endometriosis, but what a difference with little side effects (except of course the minimal pain as the endo dies).