need advice, please help

I desperately need your help and hopefully your direction. I apologize for the length of this, but trying to sum up our complicated situations in a few words is more than difficult.

Where to begin?? For those that don't know the story, I was officially diagnosed with endometriosis in January after 7.5 years of awful periods and a number of doctors who thought it was just part of being a woman.

This past Wednesday, my GYN said I was out of options at this point. This makes two GYNs (my surgeon and my current GYN) that have said that the endometriosis is not causing my chronic pelvic pain, as well as the awful periods. I've tried a number of medications and procedures (with the exception of anything that would render me infertile), all of which have been completely unsuccessful, even doing the opposite of stopping the bleeding and/or pain and making me bleed and/or be in pain continuously (moreso than what I was already doing).

Initially, he would not give me Lupron, but I got him to agree to three months of Lupron. It's a temporary fix, though. He also agreed to try Depo Provera, but I've been very skeptical of Depo (even over Lupron, odd) because of the weight gain issue. My mother says maybe the weight gain is the lesser of the evils at this point, though. My GYN said, "I've never seen someone be so debilitated by pain at 21." I appreciate the empathy, but I'm no closer to answers after many, many months of doctors (neurologist, gastroenterologist, chiropractor, waiting to see a rheumatologist--maybe a urologist down the road), $$$, tests, procedures, medications, etc. I'm sure you all are more than familiar with this.

So now I'll get to the point (and I do apologize for being long-winded), what else can perfectly mimic the symptoms of endometriosis and/or CRAMPS (both my chronic everyday cramps and the debilitating cramps I get with my periods/ovulation)? I know that IBS, fibromyalgia, etc. can do this, but I have no idea what direction to head in and what else could mimic this pain so well. I do have IBS, and I am being treated for it (successfully, thank goodness). I do not believe that I have fibromyalgia, and I believe the rheumatologist, when I see him, will give me a broad umbrella diagnosis of "arthritis." I also have some bladder issues, but those have been so minor or at least didn't compare to the PAIN, that we have no pursued that at this time. Those problems include feeling like I have to use the bathroom all the time, having a difficult time starting, feeling like I haven't voided after I have, and very infrequent leaking (not with sneezing, coughing, etc., though).

What else can cause these cramps? It seems like it could be anything.

Other things I have ruled out: MS, rheumatoid arthritis, fibroids, kind of sort of adeno (his idea was that I probably didn't have it at this young of an age, but of course we know that a hyst is what is truly needed to diagnose), lupus, a number of other things.

It's so confusing because what is the "real" pain and what is the "fake" pain? Has something else been causing the pain since I started my periods at 13? Or is the period pain the "real" pain and the chronic every day pain the "fake" pain? Does that even make sense?

I do want children, so I'm not interested in a hyst right *now*. It's odd that I probably wouldn't have a hyst for endo anyway (unlike my family members)--they'd probably agree to at least taking the uterus out (I would only agree if they took the ovaries, too--no need to TEMPT the endo to fester) just to shut me up about these periods. I have nothing to take for the pain. I cannot take OTC meds or narcotics because of the other medications I am on. I do not respond to NSAIDs or nerve blockers (like Ultram). I am DESPERATE to stop these periods. I know that many of you know what I am talking about. I'm getting by with the amount of time I miss from school and my internship because these are very understanding people, but I'm worried about what will happen next spring when I graduate and get a full-time job. Will my next employer be so understanding, or will I become unemployeed because of all the time I have to miss?

They believe it's not the endometriosis causing the pain at this point because of how aggressively they treated it in surgery back in January. My surgeon also did a partial LUNA procedure because of the location of the endometriosis. This was news to me (I didn't find out until this week???). I've also looked into presacral neurectomies, but my GYN does not perform them and they're not highly recommended (supposedly about a 50/50 success rate). However, my GYN said he wouldn't blame me if I wanted to try one because I had nothing to lose. As for the location of other endo sites, I do know that I had endo in my cul-de-sac.

Oi, for those that were patient enough to read this all--I thank you. Please, if anyone is in this situation, has been in this situation, or has ideas to offer, I am more than grateful. Even ideas are better than nothing at this point because I desperately need to control the pain. I know that at this point I may never be pain-free, and I can accept that, especially if it's to a point where I can at least function on an everyday basis. The periods have got to stop, though. I thought it was this disease (the endo) that was taking my life from me, but now I don't even know what I'm fighting and it's distressing.

So where am I headed in the future? Like I said, I'm willing to try a presacral neurectomy. I'm willing to try anti-depressants. I will probably end up in pain management before the end of the year. I'm on the fence about whether or not to try Depo Provera, but when you're in pain, you want to do whatever it takes to stop.

(((christywisty))))

I'm so very sorry. I wish I had a suggestion or two, but I honestly don't. All I can do is to send you a couple of 's and to hope that someone will come along soon who is much more knowledgeable about what might be causing your pain.

You'll be in my thoughts and prayers. I hope you find relief from your pain soon.

's

You Dear Soul--
So much for you to deal with.
Something to consider: Is the Lupron helping? If so, this might tell me that your problems might BE GYN related. I have endo(suspected-no scoping yet),fibroids, and adeno. When I asked my GYN about natural progesterone(or any progesterone for that matter) he said that it may help the endo, but might enlarge the fibroids. Have they recently done an internal(vaginal) ultrasound to see if fibroids have grown since your surgery? Adhesions? Heavy periods with clots can be associated with fibroids. Still consider your idea of seeing a urlolgist. Maybe even another GYN. My physician does do THE presacral neurectomy, but you are correct: it only works in about 75% of women and may only last for 1 year. BUT, if it provides relief, you have to make the decision if it is right for you. I am sorry if this message rambles, but I am tring to think of ANY ideas to share. I, too, share the fertility concern. You are so young to have to make such decisions. People say that God only gives us what we can handle. The truth is, He never said that. BUT, He does promise to be with us through the things we can not handle. My heart goes out to you.
Another tought: Although many people think food allergies cause a lot of problems, true food allergies USUALLY exhibit themselves with hives, difficulty breathing, throat swelling, general body swelling(angioedema) . Some people experience vomiting, diarrhea, bloating, etc., but not all. In your case, DAILY cramping sounds like something else. (Just in case you might have had thoughts about allergies.) There is always the exception, though. What about lactose intolerance?(This is not an allergy) You probably already explored that with the IBS diagnosis, but, as I said, I am trying to think of ANYTHING that might help.
Hope you find an answer,

With love like His,


LK

Thank you for your kind replies.

To answer your questions--

I convinced my doctor to try three months of Lupron, but I haven't taken him up on his offer. I was trying to decide between Lupron and Depo Provera, something I'm not wild about because I have this tendency to bleed constantly when they try to stop my periods. The thought of three months bleeding makes me cringe (if I went with Depo Provera and didn't react well).

I have had TVUs and don't appear to have fibroids. I think it's fishy to say that I wouldn't have adeno because of my age, but I'll let that one be for now.

I am going to see a urologist. If anything, he can help rule out bladder problems (such as IC), and I can "strike" that one off the list of things to check out.

I just wish I had something to help with the pain. I would even be satisfied with OTC meds if I could take them. Odd how I ended up with less options for pain relief after I started getting diagnoses and treatments for other problems!!

Hello again. Sorry to hear that stopping your periods CAUSES bleeding. Maybe you post another thread to see if other women have had that problem. I think it is fishy, too, that you had been told that you could not have adeno. at your age. I recently spoke to a woman who had a friend who had a hyster. at age 11 for endo. It used to be very common(&maybe still is) for docs to blow off cramps and bleeding as "normal" menstural activity. I have not tried Lupron, but I was on Depo years ago for BC, before I was diagnosed. The only bad side effect I remember form the Depo was decreased sex drive, which is not good when your married!! I think I had some weight gain, but nothing significant that I can remember. Since you are considering a progesterone route, maybe your doctor could prescribe an oral pill-thenif it gives you unwanted side effects, you can stop it without it remaining in your body as long as an injection. I am a RN, but GYN IS NOT MY SPECIALTY. I am learning right along with the rest of you. Be persistent in your search. I hope you find more answers. Just had another thought. OTC MEDS: If you already know this, forgive me, but are you unable to take acetaminophen (Tylenol) AND NSAIDS (aspirin, ibuprofen, naproxen) ? These categories are different. Take care!

Periwinkle--

I cannot take OTC Tylenol and the like because of how much I've taken in the past. Before I was diagnosed with endometriosis, I was taking a TON of Tylenol. I started having a lot of troubles with it (chest pain, etc.), so it's not wise to go back to it.

I cannot take OTC Ibuprofen and the like because I'm currently on Celebrex for the undiagnosed joint/muscle pain.

I have taken a number of NSAIDs in the past and have not responded to any of them. I could probably afford to stop taking Celebrex at this point, but I'm also trying to prove (to the rheumatologist) that I gave it a fair trial run.

I cannot take prescription narcotics because it causes an OD-like reaction with the other medications I am on. I'm not sure which particular medication is causing that , but it was just safe to take out all prescription narcotics. I didn't respond well to them either--everything from Vicodin to Percocet to Morphine did nothing for the pain, so I'm not missing out on much.

I've tried nerve blockers (think Ultram) and have not responded to those, as well. I went on Elavil (anti-depressant) as of today to see if I could find any relief there. Pain management will put me on anti-seizure medication after that.

Eeek, what's a girl to do??

(((Christy)))

I'm so sorry to hear that things are not getting better for you. I know you've really made the rounds of doctors and tried so hard to get a proper diagnosis so that you could make the right treatment decisions.

The one thing you say repeatedly in your original post here is that you want to stop the periods. The only options I'm aware of for doing this are progestin drugs taken continuously ... or a hyst. I know you don't want to have a hyst at age 21 and I certainly understand that.

You also ask about other conditions that mimic endometriosis. The docs say this can't be endo because of the surgery in January, right? But remember, even a small amount of endo can cause excruciating pain for some people. And I agree that adeno is a distinct possibility, even if the docs think you're too young to have it.

Your signature line says you were diagnosed with IBS on 7/10/03 ... but that date isn't even here yet. Do you mean 6/10/03? That's still not very long to see if the IBS medicine is working. IBS is so often diagnosed instead of endometriosis ... I still would not take that diagnosis to the bank.

I think the suggestion about food allergies is a possibility ... have you tried making changes in your diet to see if the pain would lessen? One thing that seems to aggravate endo is a diet high in sugar. Have you ever tried really cutting back on sugar to see if that helped?

Some other treatment options that some ladies say worked for them include acupunture (I know it's not mainstream medicine, but might be worth a try) and other herbs. I really don't know much about these options, but if I was in your situation, I'd give acupuncture a try ... and look into othere herbal remedies.

You need some relief, that's for sure. And what do you have to lose, like you say? I don't know if this helps or not, but I think you need to try something in order to get some sort of a life back.

Sending gentle hugs your way. I truly hope you find something SOON that will bring relief!

Beth

I too was diagnosed with endo. After several failed attempts at in vitro I came to the conclusion that getting pregnant was not in my future.
I went on Lupron twice. Once for 6 months and then again for 9 months. I didn't have a period for 2 years! I tolerated the side effects rather well and managed my weight with diet and exercise. The fertility meds I used put the lbs on but I was determined to lose those and I did. Currently my weight is 135.
Of course it's your decsion and your Dr. but in MHO I would give the Lupron a try.
Feel free to e me anytime!

~Jackie
Scheduled for LAVA/BSO July 28, 2003

Beth--

About the IBS, I will officially get that diagnosis on Thursday, but I've had symptoms for years. The doctors agreed that I had IBS, so they've been treating me for IBS, long before the actual diagnosis. We are all confident that I will rule out other serious possibilities and get the IBS diagnosis this week. It was the same way with my endo. I had symptoms long before I was diagnosed. We all know how that goes.

I have made changes to the diet. There was a period of time where I was more than a little frustrated with Western medicine and tried to take matters into my own hands--exercise, diet, etc. I have to eat a fairly strict diet to keep the IBS at bay, and it works, along with the Dicylomine. The diet is the easiest part to maintain, at least for me, because I know how much pain I will be in if I don't follow it.

I touched a little on herbal remedies last summer, but there came a point where I needed those diagnoses. I haven't tried acupuncture yet, not sure if insurance will pay any of that, and money is more than tight with all the doctor bills. I would be interested in trying that down the road, though. I'm willing to try just about anything. I'm not a difficult patient--just don't respond to much of anything.

Let's hope I can find some relief with the Elavil I'm starting today. I've also got my referrals to the urologist (need to rule out things like interstitial cystitis), the rheumatologist, and pain management to look forward to.

I hope everyone is doing well.

Regards,
Christy

My prayers and empathy go out to you. I now understand about the Tylenol , etc. If I come across any other resources, I'll let you know. Maybe some other younger women who have had hysters. could voice their opinions on your position. Is there liver involvement in your case? It is known that acetaminophen in high doses can damage the liver. I REALLY hoped I could find you some more info. Hang in there, kiddo.