while waiting to see another (and another, and...) doc

The more I read here, in the resources, and out in the big wide web, the more angry I am at the doctors I've seen so far.

I have no fibroids. I have no cancer, no abnormal pap smears. I have had only a sonohistogram and an endometrial biopsy. No look at ovaries, no hormone levels checked, only iron levels by my pcp.

Yes, I have very heavy bleeding, and periods that are now spotting early and dragging on & off late. I have horrible cramping that involves my thigh muscles so strongly that they are strained the next day. It is moving down below my knees as well. It includes my front, my back, and is now radiating up to my shoulders. I also have migraines with my period, and now a week or two before as well, and some months every day. I can't sleep at night for at least half the month, it varies from waking up a hundred times a night for a while, then about a week of waking and being wide awake for several hours. I have night sweats. I have fatigue hit so bad I want to cry every time I have to move. I am exhausted. I get short of breath for practically no reason, yet I can play soccer with my son and be fine. Muscles and joints go through days of aching and weakness. When things hurt, my brain is worthless. My moods go downhill at the slightest provocation.

What I have been going through regarding my period fits the descriptions of adenomyosis so exactly, it's as if I wrote them myself. I had never even heard of it before I came here. Yet they want to do an ablation, which clearly does NOT work for adenomyosis, and most likely will make things worse, forcing me to the hys, perhaps even in a few months. I have two small children and no one to help me (hubby is our sole support, which takes him away 12 hours a day). I CANNOT have a hys at this time, much as I would like to to get rid of this thing that has been torturing me since April 1975.

Besides, the migraines and pain and insomnia are the biggest problems in my life. None of these are going to be solved by the ablation. They may get worse. Some of the pain may go away with a hys, which I cannot have at this time in my life, but not all of them. Not one of these doctors has even responded when I ask what do we do to solve these. They go on about the dang bleeding.

So one by one, I am going to go through every blasted doctor in the phone book who accepts my insurance. Better to continue staggering through my months than be totally incapacitated by some irresponsive, irresponsible doctor.

I am going to buy black underwear, or any other dark color that won't show stains. I am going to get black pants, and wear them most of the month. I am going to find a source of wholesale, by the case, ibuprofen and tampons and pads. I am going to waste a lot of time dragging my little one to doctors. If we hit them all up for stickers & candy & kid surprises, we might make back some of the hassle in merchandise. If I keep this up long enough, maybe I'll be lucky and menopause will come. Should be here in about 10 years, anyway.

But I am not going to let some "what the heck, you may as well try it, it can't get any worse anyway, can it?" jerk mess me up.

staggering - if your insurance will cover it get an MRI .the hospital does not need a referal from your dr. maybe then you can find out if adeno is your problem. if you do need a hyst there will never be a good time for it. take care of yourself

jane321

Hi Staggering,

I agree with Jane. I have also read on H.S. that a MRI helps to diagnose adeno.

I am not a Dr. and it sounds like you could have perimenopausel symptoms too. Heavier bleeding and night sweats. Also, the weakness?? could be due to some anemia from blood loss.

Best wishes. We Hyster Sisters are here to help, if we can.

Mary

staggering
i just would like to add that your insomnia can be helped with some sleeping pills . can you go to your GP and ask for some? if you sleep better then maybe you can function a little better during the day so your not so emotional?

Staggering - I went back and read your posts from the beginning. I thought I remembered you from posting on one of them. (oh yeah! the one about the horse's patootie, who I guess you FIRED)
Given the conflicting input that you started out with from day one because no one would LISTEN to you, it seems now like you've done tons of research, and you're at least getting a little closer to a diagnosis of what's really going on.
I'm wondering - is there a major teaching hospital somewhere near you? I had a really good experience using one near me. (I'm not anywhere near you, though) Anyway, my thinking is that they have cutting edge diagnostic equipment (and educations) and you might be able to get to the solution a little sooner than paging through the phonebook again, there's gotta be a better way.
AND I wholeheartedly agree, there will never be a 'good' time to schedule a surgery, whatever it ends up being. You need to take care of yourself anyway - soon! (keep us posted, OK?)

joano

I have a toddler/preschooler. She won't be three until New Year's Eve. She only weighs 25 pounds, but that is way too much to be carrying after surgery of any kind. She's currently in a "take care of me" stage. I have to lift her, and carry her, a lot. She has abandoned potty learning, which she had almost mastered, so diaper changes mean either lifting her up or getting down to the floor. It takes all of my weight and strength to tighten the car seat straps sufficiently, since she is much taller than her weight, she is very thin and this is the only carseat that fit in my car that adequately fits her build to keep her safe. At the rate she's (not)gaining weight, she won't weigh the 40 pounds to legally be out of the carseat until she's 8, but that's a whole other story.

I also have a seven year old, second grade, who is now in an independent (=private) school because he is too gentle, kind, and smart (math at middle school level) to be in public school. The school is only 6 miles from my home, but I have to drive him to and from it, no busses. Which also means I have to put the little one in the car & carseat each trip. We have to go to his classroom, up two flights of stairs, to get him at the end of the day (they don't let the elementary kids leave the room unattended). Little one falls asleep on the way each afternoon, so I carry her, asleep and dead weight, up to the classroom and back to the car. Then, when we get home, I carry her in to finish her nap. She's trying to give up her naps, but that car ride is more than she can resist every day.

I have no one nearby to help. I have no one farther away who would/could come and help. I have no money to pay for help (we're not quite meeting bills as it is, and my son is on scholarship at his school. Please pray that they continue the financial aid for him so that I don't have to stick him back in public school, or isolate him completely by homeschooling, which is not popular around here so there aren't many others to join with.)

In a few years, the little one will not need to be lifted or carried so much. Nor will she expect to be, or be so upset if I say no. In two years, she can start kindergarten, even tho she will be the youngest in her class, heck, she's ready to go now, except for the nap & diapers. When she's in school, I can go back to work and save up enough money to pay for help while I'm incapacitated.

if I let some careless doc mess with things now and they get worse, then I can't wait those few years.

Yes, I sound perimenopausal. But I'm too young for that, I guess. Maybe I should tell them I lied about my age and I'm really 47, not 42. In fact, I have many, many of the symptoms of post tubal ligation syndrome (ptls), which I looked up because they want to do a tubal as well, since I can't tolerate bc pills. Ptls happens when the arteries to the ovaries are damaged during the surgery, and the ovaries in part or in whole, basically die and stop functioning. But since, as dr. patootie snapped at me, I didn't HAVE a tubal, I don't have the syndrome, and he wouldn't discuss hormone problems with me. Not his area. (hello? don't gyn's do menopause?) Nothing outside the uterus.

So, I have to find a doc who treats female human beings, not just their favorite organ. Good luck to me. Also have to find one who believes me when I warn that I am very, very sensitive to medications, and doesn't just try to push something on me. I have a four page list of medicines that I have taken during my life that have caused side effects that range from problematic to life threatening (like the single tylenol-with-codeine that made me so high I put the iron in the fridge so it couldn't get hot and burn the house down to the group of antihistamines that actually make my throat swell shut). Is why sleeping pills are something I won't consider. My whole family is this way. My father has almost been killed several times by the medicines they have given him in the hospital (stroke victim, is in & out of hospital a few times a year).

It ain't easy when you're not normal. I guess I was born in the wrong century, I either belong several centuries back before modern med, or several in the future. But I sure as heck don't fit in now. And since I have a few degrees in the hard sciences, and can talk to the docs pretty much on their level scientifically, they feel threatened and then get hostile when I question what they tell me.

I'm only a couple hours from a couple major cities & hospital centers, including Yale. But I have to tow my little one along, and be back in time to get my son from school. And my previous experiences (& my sister's) with Yale leave a lot to be desired. They fail miserably in the human component.

Jane321, will check into the hospital/mri thing. I know I do have to have my insurance precertify it, so I probably will need a doc involved. Tried to make an appointment with an endocrinologist there (that my pcp gave me the name of), but they only take people tested and diagnosed by someone else first. And so far, no one else is taking me seriously. A week from friday I'm talking with a midwife at the birth center across from the hospital. Weird place to be seeking menopause help, but they said they do it. And at least they were willing to give me an appointment *to* talk.

Thanks for the support. I really need it.