Overwhelmed

painbegone · 09-02-2008, 08:25 PM

Hi everyone,
I am new to this site. I came across it in the middle of the night recently while looking for treatment methods and just general information. I am hoping that someone can help me figure out what to do next. I feel as though I am coming to the end of my rope.

Okay so a bit of background..two years ago I started feeling very lethargic, my period stopped completely, I gained 100lbs, and started intermittently feeling pain. This began the first round of tests and doctors visits which resulted in my drivers liscense being reviewed because I fainted, me being put on anti-depressants which did nothing but make me sad, and all of that left me still with no real diagnosis.

Several months later I was on vacation and had this horrible stabbing pain which lasted several hours and ended with several blood clots the size of softballs. I made an appt. with my doctor but while I waited the pain became so severe that I would suddenly buckle and scream The ER saw cysts. The next day the gyn said they weren't there. Several months of horrifying pain, painful tests, doctors blaming me for my syptoms, and pain medication that seemed to get stronger and stronger eack week.(started with perscription motrin ended with morphine and percaset) The doctors could find nothing and I was in so much pain that I could not walk around. The doctors also were cruela nd vicious in the way they dealt with me.

Next I found a homeopathic doctor who was able to diagnos me with endometriosis and celiac disease. She treated me seemingly succesfully for almost a year. However I still was gaining weight and could not loose any even after excluding soy, red meat, gluten, dairy, and processed foods. I also have only had two periods in the last two years both which had so much blood they had to manually close the opening to my uterus.

Now the old symptoms are coming back. My new doctors are certain that I have PCOS with insulin resistance but no one has done laproscopic surgery. I am a junior at University and just need this to be done I want to be a kid!

Sorry that was so long but my main question is what should I do next? Laproscopy? Metaformin? Keep treating naturally? Will laproscopic take me out of school? I miss so much already from pain and other ailments. I know only I can make the decision but I could really use some help.

Thank you in advance for reading this whole thing.

Renee3600 · 09-05-2008, 12:36 AM

Well, I can't tell you what meds to take. You'll have to work with docs you trust about that and try to find what works best for you. Metformin does help many people with IR. I do know that the only way to officially get a diagnosis for endometriosis is through a laparoscopy. If you do go that route your doc will clean out as much of the endo as they can and that may help with the pain. They would also be able to see if there are any large cysts while they are in there. They can usually see cysts through ultrasound as well. Is that how the one doc saw them? The lap procedure it's self usually isn't too bad. If there are no infections (usually there aren't) the most you would be out of school is a week or 2 weeks. I had mine done on a Friday and was back to work 2 days later. Everyone responds to the procedure differently. Good luck and I hope you are able to find some relief!

OliviaLeigh · 09-05-2008, 07:48 PM

If the dr suspects Endo, you need to have the lap done for diagnosis and to have it "cleaned out" as the PP pointed out. It's important b/c 1. you need to know for sure that is what is causing you problems (and not something else) and 2. so it does not get worse.

I am SO glad I had my lap and it was very easy. Please feel free to ask questions, etc....we're all here to help

painbegone · 09-06-2008, 03:13 PM

Thank you! The doctors refuse to do lap because of how much weight I have gained from the PCOS. I had a blood test to check my insulin resistance on Thurs. I also went and talked to a nutritionist who specializes in women with chronic disease. She put me on a special diet that is tailored to my basil metabollic rate and muscle mass. My allopathic doctor is trying to find the cause for my illness ( I have many other symptoms that suggest somthing else is wrong). So I am having my traditional doctor do genetic testing and an autoimmune panel. Did anyone else go this route?

OliviaLeigh · 09-06-2008, 04:09 PM

I can't give any insight to the weight issue, but autoimmune has been known to me since my early teens.

I have scleroderma, rheumatoid arthritis, positive ANA for years and positive Rh factor (and PCOS & Endometriosis). When I was first having autoimmune problems I had to do blood work every other week for 16 weeks to see what the heck was going on. I was also dx with leukopenia (low WBC in the blood). Since then, I've had so many autoimmune problems and yes, I associate PCOS (in my case) to autoimmune. If the autoimmune panel comes back w/ a positive ANA or any other "indicator" seek help from a rheumatologist.

Sounds like you are on the right track w/ your weight - did they tell you how much to lose to do the lap? I have read that it is more difficult in overweight women, but I know very little about it. You may want to contact the Endometriosis Association w/ questions regarding weight & lap. They are very helpful. I've found I have to follow a strict diet to control my weight and pain (certain hormones in milk, meat, and sugar bother me).

Speaking of being tired, have you been tested to see if your hormones are alright? Do you perhaps have a B12 deficiency? See if the dr can run a panel to check all the levels of hormones, etc that your thyroid produces.

Theres a book pusblished by the Endometriosis Association that I have found really helpful (their 2nd edition of Endometriosis - available at any bookstore). If you contact them I think they can send you all the Endo information brochures for free too.

Although it sounds like your dr's are working with you, just be sure to know you are your #1 advocate. If you are in pain, don't give up getting answers.

If you have any questions, let me know. Otherwise I think you are on the right track to getting some answers!

tmcurtiss · 09-29-2008, 11:15 AM

The pain you described sounds like cysts rupturing. That has got to be the worst pain I have ever gone through. One time I had a large one rupture during intercourse. I had strong cramping when I went to bed, but with endo you kind of tune that pain out. I woke up in the middle of the night doubled over. I told my husband I thought he should take me to the hospital. I got out of bed to get dressed and passed out. I woke up and an ambulance was there and they rushed me to the hospital. In the ER my blood pressure kept dropping from the pain and I would pass out again. They had me on a morphine drip while they ran tests. They could not figure out what was wrong with me but suspected that it was a cyct because there was some fluid in my abdomen. They sent me home barely able to walk and throwing up. I followed up with my doctor who still couldn't see anything in my abdomen. I have had other cysts rupture since then, but never that bad. I kinda know what the pain is and take a couple of pain pills and retreat to my bed. There isn't anything they can do about it after it ruptures.
So, after that long story.....1) Listen to your body. You know that you are not "crazy", so don't let a doctor treat you like you are. 2) Find a doctor skilled in dealing with endo AND PCOS. Sounds like you could have both, but you really need to be evaluated by a professional and formally diagnosed.

painbegone · 09-30-2008, 08:27 PM

Thank you! I just went through two week s of severe pain followed by the hemmorage(sp?) type bleeding and we were finally able to see in an ultrasound both fluid in my abdomen as well as what seems like hundreds of cysts of all sizes. Your experience is so comforting to me, I know is odd seeing that it is a horrible thing to have happen, but it sounds just like me. I finally found a set of doctors that I really like. I am seeing a Gyn, endocrinologist, and an naturopath doctor. They are all working together and I seem to be getting better, at least the pain is. I just started metformin and the plan is currently to get enough weight off so that I can do the laporoscopy and clean up everything else. Thank you agian to everyone who posted. You got me thorugh a really tough time. Hugs to all of you!