Have you tried eliminating anything else from your diet? I have Crohn's disease + other stuff going on & I've been eating fruits, vegetables, and meat for the last week. That's it; no legumes or potatoes or corn either. It sucks, a lot...but I'm starting to feel better. My GI symptoms are definitely decreasing. I know you think it's hormonal, but maybe it's also/partially diet related?
I hope you find an answer soon! I know how frustrating this is
It took me 6 years and 4 doctors (two kicked me out of the practice due to being "unable to handle my case", two I left on my own) before I finally found someone willing to LISTEN to me and do something about my issues. This doesn't include the 4-5 other doctors I only saw once (see below).
Since then I've found a primary care nurse practitioner that actually has been able to help me. She found a surgeon willing to take on my case and fix my issues.
One thing that helped while doctor shopping was that I made a brief sheet with bullet points of my medical history and then why I wanted to see them (current meds and dosage too). I handed it to the nurse before seeing the doctor and asked them to have the doctor look over it before seeing me. If the doctor (or NP etc) came in and seemed like they had read my brief synopsis of my concerns and that they were able to ask questions and offer suggestions then I followed through and continued seeing them. Four (I was sure it was 5, but I can't think of the 5th one) didn't even make it past an initial visit. They were curt with me, didn't seem interested that I briefed them, one made fun of my "hypochondriac paper"...
I hope you find what you need. It's not easy finding the right doctor - hell it was easier to find a husband for me - but it cane be done!
Have you been tested for endometriosis? I have the "can't leave the bathroom" kind of side effects - puking and other fun. I live on immodium. (and it's not just around period). GI appts haven't shown any other causes besides the endo.
And that really blows.
I've had a few doctors (including GYNs) mention that I probably have endometriosis, especially because I get so, so sick before and during my periods. I have always told all of my doctors that I am convinced that all of my symptoms are caused by hormones, but they always look at me like I'm nutty and start running more tests. I'm on BCP now that are supposed to stop me from having periods at all, but they aren't don't a very good job and I'm still getting sick like clockwork even though I'm on them.
No one has wanted to actually test me for it, though. The only way to actually find out if you have it is to do exploratory surgery, right? Are there other tests now?
Back when I was diagnosed, the laparoscopy was considered the only way, mainly because endometrial tissue is the same density as normal tissue, and same density as normal endo tissue, so things that rely upon contrast like an ultrasound couldn't see where the tissue was located abnormally. I don't know if doctors have changed their stance or technology has changed for diagnosis w/o surgery. I have heard from a few people recently that they were diagnosed but without a laparoscopy. I hope it gets to the point that surgery is not needed for diagnosis!
Many doctors labeled mine stress related before eventual diagnosis. I had a stress-free year living in a van, camping and drivign around Australia, and I was still insanely sick, so... I knew it wasn't all stress, though stress does exacerbate it.
It took awhile for me to realize that the timing of the majority of the puking and other side fun was corresponding to periods and to ovulation time.
Maybe try finding a good OB/GYN. Honestly though, endo really sucks as a diagnosis. On one hand, it's great to have a diagnosis. On the other hand, you have a diagnosis that has very limited treatment options, and they don't really cure it. But you can get some relief. Textbookcase on here also has been through a lot of endo/treatment rigamarole (for pain and health issues, not necessarily for fertility specifically). Just letting you know in case you have questions and I"m not on as I haven't been on much. There are several others on here who have struggled with it for years (or decades) as well. Wow. Just realized it's been about 18 years that I've had issues w/ it. That just makes me old. Damn.
Post by thatgirl2478 on Jan 20, 2013 22:37:50 GMT -5
I don't know if it'll help any - but can you find a PCP who's a DO (Dr of Osteopathy)? They have a tendency to look at the body as a whole system instead of pieces of a machine.
If it's something like endo, I had very good results eliminating lactose from my diet. No milk, cheese, chicken fingers or french fries. Really, lactose in chicken finger breading sent me over the edge once.
It'll be really nice if a diet change does work. Textbookcase can give you some info on the endo diet she had tried. I know she went off it after giving it a long try - she wasn't seeing relief corresponding to how restrictive it was, however some have found success on it.
I've done some diet change trials over the years with it, and didn't find any that really impacted how sick I was. I do avoid onions when I'm close to the times when I'd be sickest, and usually less dairy, but I don't really eat much dairy other than cheese.
When did you start taking the pill? Some people are allergic to it and have symptoms similar to what you are describing.
I was just going to ask this as well.
I had horrible stomach problems for years. I finally went to the doc and after 9 months of testing she decided that I had IBS. I *knew* I didn't. I didn't have any triggers and it didn't make sense. I went of BCPs when I forgot to refill my rx and stayed off for awhile. My symptoms completely went away. I brought it up to the doc and she said it wasn't possible and restated that it was IBS. I switched to Depo and later Mirena and haven't had problems since.
Not saying that is what is wrong with you, but it is something else that most people don't think/know about. I'm really sorry you're going through this. It's miserable.
When did you start taking the pill? Some people are allergic to it and have symptoms similar to what you are describing.
I was just going to ask this as well.
I had horrible stomach problems for years. I finally went to the doc and after 9 months of testing she decided that I had IBS. I *knew* I didn't. I didn't have any triggers and it didn't make sense. I went of BCPs when I forgot to refill my rx and stayed off for awhile. My symptoms completely went away. I brought it up to the doc and she said it wasn't possible and restated that it was IBS. I switched to Depo and later Mirena and haven't had problems since.
Not saying that is what is wrong with you, but it is something else that most people don't think/know about. I'm really sorry you're going through this. It's miserable.
I've only been on it since February. Before that (starting in 2010) I had an Implanon, and before that I only ever tried a couple of BCs before quickly giving up because I wasn't sexually active and all the ones I tried gave me terrible stomach related side effects.
Have you tried eliminating anything else from your diet? I have Crohn's disease + other stuff going on & I've been eating fruits, vegetables, and meat for the last week. That's it; no legumes or potatoes or corn either. It sucks, a lot...but I'm starting to feel better. My GI symptoms are definitely decreasing. I know you think it's hormonal, but maybe it's also/partially diet related?
I hope you find an answer soon! I know how frustrating this is
I learned fairly quickly that I couldn't have eggs, dairy, any vegetable, MSG, and to always go easy on spices/seasonings in general. Within the past few months I've successfully added dairy back into my diet without much issue, but I haven't had success with any of the others. My diet is based around breads, pastas, and potatoes so I know that I'm not getting the nutrition I need, but every time I try to add any of those things back into my diet I have a flair up. Potatoes are an interesting idea, though. I would hate to give up one of my staples, but it might be worth a try.
It took me 6 years and 4 doctors (two kicked me out of the practice due to being "unable to handle my case", two I left on my own) before I finally found someone willing to LISTEN to me and do something about my issues. This doesn't include the 4-5 other doctors I only saw once (see below).
Since then I've found a primary care nurse practitioner that actually has been able to help me. She found a surgeon willing to take on my case and fix my issues.
One thing that helped while doctor shopping was that I made a brief sheet with bullet points of my medical history and then why I wanted to see them (current meds and dosage too). I handed it to the nurse before seeing the doctor and asked them to have the doctor look over it before seeing me. If the doctor (or NP etc) came in and seemed like they had read my brief synopsis of my concerns and that they were able to ask questions and offer suggestions then I followed through and continued seeing them. Four (I was sure it was 5, but I can't think of the 5th one) didn't even make it past an initial visit. They were curt with me, didn't seem interested that I briefed them, one made fun of my "hypochondriac paper"...
I hope you find what you need. It's not easy finding the right doctor - hell it was easier to find a husband for me - but it cane be done!
Good luck!!
This is a good idea. Would it be a good idea to get a copy of my medical records/chart notes to look over to help me make a good overview?
I don't know if it'll help any - but can you find a PCP who's a DO (Dr of Osteopathy)? They have a tendency to look at the body as a whole system instead of pieces of a machine.
I didn't know this. Thank you for the idea. I know that the local Internal Medicine offices have DOs, so that's definitely something for me to look into.
I've had a few doctors (including GYNs) mention that I probably have endometriosis, especially because I get so, so sick before and during my periods. I have always told all of my doctors that I am convinced that all of my symptoms are caused by hormones, but they always look at me like I'm nutty and start running more tests. I'm on BCP now that are supposed to stop me from having periods at all, but they aren't don't a very good job and I'm still getting sick like clockwork even though I'm on them.
No one has wanted to actually test me for it, though. The only way to actually find out if you have it is to do exploratory surgery, right? Are there other tests now?
Back when I was diagnosed, the laparoscopy was considered the only way, mainly because endometrial tissue is the same density as normal tissue, and same density as normal endo tissue, so things that rely upon contrast like an ultrasound couldn't see where the tissue was located abnormally. I don't know if doctors have changed their stance or technology has changed for diagnosis w/o surgery. I have heard from a few people recently that they were diagnosed but without a laparoscopy. I hope it gets to the point that surgery is not needed for diagnosis!
Many doctors labeled mine stress related before eventual diagnosis. I had a stress-free year living in a van, camping and drivign around Australia, and I was still insanely sick, so... I knew it wasn't all stress, though stress does exacerbate it.
It took awhile for me to realize that the timing of the majority of the puking and other side fun was corresponding to periods and to ovulation time.
Maybe try finding a good OB/GYN. Honestly though, endo really sucks as a diagnosis. On one hand, it's great to have a diagnosis. On the other hand, you have a diagnosis that has very limited treatment options, and they don't really cure it. But you can get some relief. Textbookcase on here also has been through a lot of endo/treatment rigamarole (for pain and health issues, not necessarily for fertility specifically). Just letting you know in case you have questions and I"m not on as I haven't been on much. There are several others on here who have struggled with it for years (or decades) as well. Wow. Just realized it's been about 18 years that I've had issues w/ it. That just makes me old. Damn.
I cannot begin to tell you how nice it is to hear from other people that I'm not entirely out of my mind with all of this. My PCP was acting as my GYN, so I suppose I'm going to need to add that to my list of things to research and decide on. I really don't want to get a laparoscopy, so hopefully there's another way they might be able to find out. Are there treatment options other than diet changes (which I would absolutely be willing to try, diagnosis or not), or is it more of a label diagnosis that just tells you what's wrong?
My homework is done so I've got to get to bed. I'm sorry if I missed anyone, but I'll check back in the morning. Thank you all so much. It means a lot to know that I'm not alone.
Crossing my fingers I'll feel better in the morning.
When a laparoscopy is done, they excise visible tissue (as well as biopsy it). That is diagnosis, and one treatment. The excising didn't do much for me - there's plenty of tissue hard to find such as around intestines.
Other treatments are usually: 1. do nothing (not an option for me w/ pain and issues) 2. continually take the pill and avoid periods (worked for me for awhile, I'd go back on it on and off as needed or desired. Basically prevents tissue growth). 3. Surgery - laparoscopies as needed to excise. Some doctors prefer this, some think it poses more risk of spreading tissue from instruments as they extract tissue. Supposedly some surgeons are way more skilled at endo as others. There's a center in atlanta, I think, that's well known, but that's a private expense kind of option, I think. 4. Lupron (or a nasal spray version, Synarel). Usually a 6 mo max treatment. Has a lot of side effects, can cause bone density reduction, and some hellish side effects. It sucked for me in many many ways. But on the other hand, it reduced pain in that time frame and beyond for awhile until the endo started to creep back. 5. Pregnancy (sucks to call this a treatment, but does stop symptoms) Some say it cures. Mine seems to be back. 6. hysterectomy - really a last resort. It's come up a bunch for me, and now I'm glad I didn't years ago when I was in the worst of the pain.
I can't think of any others offhand (Besides diet, accupuncture, alternative healing methods.) I didn't try acupunture, but i have toyed with trying it when having pain.
Big hugs. That sounds really difficult. Have considered seeing a therapist to help with the anxiety all of this causes?
My last therapist spent a few sessions with me and decided that I was not ready for treatment. He told me that I have anxiety, depression, and OCD and that I needed to decide what I thought should be treated first. He gave me a book on anxiety and said I could come back once I read it and felt I understood what everything meant a bit better.
Well, I was really hurt by what felt like a dismissal thanks to how fucked in the head I am, I work full time, and I am a full time student so I never got around to reading it and never went back.
I'm sorry your doctors suck. I really would consider seeing someone with regard to the stress possibility; I feel stress almost entirely in my digestive system and it results in the same symptoms you describe and can be long-lasting if not addressed. When my father passed away I didn't eat a full meal for like six months.
Basically, I don't doubt that there's a physical ailment, but I think it may be being exacerbated to the nth degree by the stress you've been under lately.
I definitely agree.
I'm frustrated because now I'm back at step one. My body hasn't tolerated any of the anti-anxiety meds they've had me try, and now I have to find a PCP I like, who can then refer me to a therapist I like, and with work and school I don't really have that much time during normal business hours that I can devote to appointments.
I'm making excuses, though. I know that I need to suck it up and keep trying.