11 years of "you'll grow out of it", "its not abnormal", "there's nothing we can really do" "plenty of people go through this all the time"
I'm just tired. I had another bad episode last night with my endo. laying on a tile floor in the fetal position at 25 years old, and having to have someone wake my mom up to help me. I couldn't stand up, and when she did stand me up I immediately puked from the pain surging and then spent another 2 hours on the couch writhing, fevering, going into cold sweats, going numb and tingly..its just too much.
I take the Rx they gave me, to no avail, because I'm supposed to take it twice a day a few days before i know "its" coming, and being as there is no set schedule and it shows up whenever, after a month where I was taking painkillers twice a day for over a week for nothing, I can't really do that either. it's not like I don't keep track, I have all the dates saved on my phones calendar, it just does what it wants.
I eat healthy, I exercise, I rarely take medications for anything, and even with their rx that Im not supposed to take anything else with, I have to litterally about overdose on those, mixed with ibuprophen and tylenol JUST to numb it out, I pitty my liver, I really do.
I'm just so tired of it. It prevents me from living a presumably normal life, makes jobs hard to get, and it's tiring to have no dr actually work with me.
I don't plan on having children. I really feel that if I wanted a child, I would rather give a family to a child who doesn't have one that create one myself. My mom always said that too, after she had me it got "better"
It just gets old. Granted, the reaction from the male gender is usually comical, one of my bosses almost called me an ambulance and he turned whiter than I turn at the sight of me on the floor at work, or my other bosses reaction to me bursting into tears at work, but man.
my most recent doctor just told me I have two options, surgery would be useless, and sent me home with a bunch of pamphlets.
I don't like the mental fog the hormones created in my birth controls, the sharp head pains and heart palpatations, or the withdrawl symptoms I went through coming off of them. And now, since I'm married (not that they would) I can't just have it cut out either, without the hubs permission, and hell would ice over before I got that permission.
Do you mean endometriosis? They wanted to test me for that through secondary infertility, and mainly because I had unusual and extreme pain for awhile there. A few girlfriends I know were diagnosed (one had two children later).
Have you tried any alternate medicine/therapy? I've heard of using chinese medicine and some other alternate therapy, maybe acupuncture? I can't remember exactly what it was. I'm not sure what you've tried or what's out there as well as medication. I have known a good healer (not sure what you believe or have tried).
My wife went thorough similar. It's hard to watch someone go through the pain and know that nothing will help. she went through meds that essentially put her into menopause, and when that didn't clear it, her Dr. did exploratory surgery, and didn't find anything conclusive.
It finally did go away after we had children.
Probably not a real bright ray of sunshine, but hang in there!
Yeah, the only thing that worked for my sister was having children.
Have you tried multiple doctors? Have you tried a teaching university? Have you googled specialists in the field? Have you googled groups with your condition on the internet? Maybe you can get a recommendation for another specialist.
You have nothing to lose by trying new options. Good luck.
Ultimately, The best way to treat it is hormone therapy. Which is my issue, because of my own prior bad experiences.
They can go in and burn off anything they find, and see if that makes it better, they can give me injections that shut down and "reset" my organs to see if that helps, do a uh D&C? where they scrape the uterine wall clean, surgery where they burn off the uterine wall. I've seen about a dozen different recommendations for diet change, all of which were different. Gotten lectures on exercising more so now I'm going to the gym 3-4 times a week and this month was worse than the last 2.
I think, I'm going to push to have a hormone pallet done. that's the only thing that perhaps seems it would give me leeway on what my real options might be. The rest of it more or less just turns into hit or miss, one of my coworkers has been going through all these motions for her ovary problems and none of it has helped, it's actually made it worse. I know she's never had the bloodwork done for the hormone pallet, so being injected with all these hormones, surgeries, etc she has suffered MORE extensively than she was, and that's kind of backwards to me.
I'm so sorry you are dealing with this. It is a very frustrating disease and the doctors just seem so nonchalant about it. Espeically male doctors. I hate it!!!
I was diagnosed when I was 21. That was after countless times of severe pain, being mis-diagnosed with "kidney stones" after ending up in the emergency room, and countless horrible internal ultrasounds...
I eventually had surgery which helped. But now, 11 years later, I am feeling the same pain come back. It really sucks b/c I am dreading that horrible pain....DREADING IT.
I was told the only "cure" was to have children. I am not having a child just to "cure" this. I never wanted children so this is not an option for me. H had a vasectomy anyways....
Hang in there. I know its rough. My friend also has endo but she went to a great clinic out on the east coast and they totally irradicated it for her. It is specifically a clinic to treat PCOS and Endo. PM me if you would like any contact information.
What helped her was to stop having her period. She went on birth control pills non-stop (doctor prescribed). Instead of taking BC normal with three weeks on and then the one week off with the placebo pills, after week three she opened the next pack and started with pill 1. She rarely gets her period and this has helped quite a bit. There are some BC pills marketed this way like Seasonal or something like that, which make it so you have your period every 3 months. Even that is not as good in the beginning. You need to let your uterus heal. Now if she gets the occasional period (misses a pill or stress will push it through) her pain is no where near where it was.
The fact is every time you have your period it enrages the endo. Stop having your period and you may get some relief. I wouldn't be too worried about any negative side effects, my wife has been doing this for years and so far it has not hurt her. When she wanted to have kids she stopped taking the pills and got pregnant right away. I can tell you that pregnancy helped a lot too, although the first trimester with our first child was very hard on her as her uterus stretched through the scar and endometrial tissue.
It's a very hard thing to deal with, sorry you are having the problem. only other advice I have is to see a fertility specialist instead of a regular OB/GYN. The fertility specialist was the one who helped her the most with managing it.
I'm sooo sorry to hear of this. Hugs to you. I have a co-worker with this, she can be seen under her desk sometimes, I have seen the look of pain on her face. Another gal I talk to online also has terrible endo, and she found a cure in the Mirena. (Which is where I found out the side benefit is no more monthlies). She swears that there are no side effects like bc pills, and since I can't handle hormones either, I had my endocronoligist give me the full details before I went ahead with it.
The thing about being preggo and having no more endo symptons, is the progesterone hormone. Which is what is in the Mirena, NOT estrogen based. Estrogen b\c is horrible for a lot of people.