Strange adeno goings on~~~~
Question:
hello all- I have adeno along with endo. Any of you have this at all?? I get cramps 3 or 4 days before my period starts. Then once it gets here-minimal pain but a HEAVY HEMMORAGHIC FLOW that goes for 3 days. Very weird. My doc says the uterus dosn’t contract properly to control the flow, but didn’t say what to do about it. The flow sorta falls outta me. Lots of clots as well. WE have already gone over the hyst idea. NO WAY!!!! The pain & cramps before the period are lousy and annoying. Kinda feels like the period is prolonged, or something like that. Please e-mail me if you have gone thru this-thanks!!!
Response:
Hey Marcy, You poor dear! Yes, I can relate first hand to the heavy adeno flow. I thought the CEOs of all the sanitary pad companies should have sent me personal letters of thanks for contributing to record profits when I still had my uterus! =P Seriously, though, I found there were a couple of days each month that I literally COULD NOT leave the house! One time I passed a clot so big in Toys-R-US that I started to black out and had to hold on to a conveniently near pole to keep from falling down! I remember the pain before and after my 8 or more days of intermittent bleeding being practically unbearable and frustrating because it seemed like there was no reason for it when the flow was light. It was always a relief when the heavy bleeding started because I had the feeling it was flushing the pain out. Unfortunately, it always returned and stayed for a couple of days even when the light bleeding had stopped. Like you said, it does feel like your period is prolonged with all those before and after cramps. Plus I had a very short cycle (21-24 days) so it seemed like I was spending half my life OTR! You sound very negative about the hyst "solution" and I certainly don’t want to dissuade you from your convictions, but I have to say that my hyst did take care of much of my pain and suffering. I still have ovaries and ENDO and problems w/ adhesions(?)…heck, I still even have PERIODS due to where my endo is located…but I’ve gotta say I don’t miss that big, painful, old uterus! But I was lucky enough to have a child before my adeno got too bad and had pretty much given up on having more after the subsequent two miscarriages, so the decision was probably easier for me than it might be for someone younger and with different circumstances. I sure wish I had a temporary solution for you…I say "temporary" because there is no permanent solution to this crap! Have you tried continuous bcps so you don’t get a period at all???? I couldn’t take bcps after awhile…too many unpleasant side effects like insomnia and depression, but it might be something you could tolerate and at least give you some relief from all that bleeding. Sorry, I couldn’t offer any real constructive advice, but my email door is always open if you need someone who’s "been there" to listen and understand. XOMichelleA (the Michka one)!
Response:
Sorry to say I’ve gone through it but had the hyst . I have two kids and had necesarily the endo . I’ve had one ovary out since and worrying about the other. No periods is nice but there may be alternatives . Adeno has no other cure but it’s still your call. I know women who just wait it out til menopause. Hang in there but listen to good DR’s love LS
Response:
I’m 44 and I’ve been going through the same thing for three years, adenomyosis has been suspected but never actually been confirmed with an MRI. Sonogram and hysterscopy showed no growths, and wouldn’t detect adenomyosis anyway. Depending on how deep the adenomyosis is, an abulation might work. If it’s too deep it won’t, I’ve been told. Some choices are prostaglandin inhibitors (if you are not allergic to asprin like me) BC pills (if you don’t have a history of breast cancer like me), or provera (if you can take the side effects). I used natural progesterone for 2 years it didn’t help, but it’s worth a shot. I’d have a hystectomy if I had the option to keep my cervix (good luck finding a doctor who will do that anymore). Unless the organ is diseased, I don’t know why they automatically take it out. Supposedly it’s to prevent cancer. That’s like saying let’s remove your breasts so you don’t have to worry about cancer anymore. I know my body, and I know I will not have the same sexual response without my cervix and I don’t want to trade bleeding for sexual dysfunction. So, until I can find the right surgeon, I am at an impasse. Lucy
Response:
Hi Kelly- Thanks for the post. I can’t do BCP’s ’cause of the weight gain. I go to the gym as often as I can & take vitamins, so BCP’s are really against the way I want to go. I know I will just have to suffer as long as possible, because I know that if I have a hyst, it will not make it go away. It may help the adeno, but the endo will still be going strong w/my remaining ovary. I appreciate your help!!!! Luv-Marcy
Response:
Hi Sylvia- Thanks for replying to the post on adeno. My doc has suggested a hyst, which I will not do. I don’t know of any other alternatives. I do take vitamins & exercise regularly, but to no avail. I have to say adeno pain is much worse than just having endo-of course, in life I never do anything small!!!! Luv-Marcy
Response:
Marcy, Been there and done that. Those were my symptoms exactly except my period was coming twice a month and lasting 6-7 days each time. The pits. I opted for hyst but that was a totally personal choice. The only other thing I can say is heating pads, hot showers, super ultra mega maxi pads and whatever kind of pain pill you take. Mine was Motrin 800mg with a percocet every now and then. Are you on any BCP’s or Depo provera. Depo saved me for a while because I didn’t have periods while taking it. Just a thought. Kelly
– Hide quoted text — Show quoted text -hello all- I have adeno along with endo. Any of you have this at all?? I get cramps 3 or 4 days before my period starts. Then once it gets here-minimal pain but a HEAVY HEMMORAGHIC FLOW that goes for 3 days. Very weird. My doc says the uterus dosn’t contract properly to control the flow, but didn’t say what to do about it. The flow sorta falls outta me. Lots of clots as well. WE have already gone over the hyst idea. NO WAY!!!! The pain & cramps before the period are lousy and annoying. Kinda feels like the period is prolonged, or something like that. Please e-mail me if you have gone thru this-thanks!!!
Response:
Hi, Well I have only been dx with Endo, but I tell you what, you sound like me. When I do bleed, it is so heavy, I have to change (overnight pads) every 15-20 minutes. It just flows like there is no tomorrow. I also have pain before and after my period. After my period my stomach feels like some one just punched the heck out of it. It is horrible. I do have an enlarged uterus and a fibroid pressing on my bladder. So I assumed my condition was the fibroid, but now I wonder? Sorry I can’t help you, but I sure can tell you I know what it’s like. Lori Hart
Response:
Marcy; I had Adeno as well.. Lots of heavy bleeding.. Adeno is Endo inside the uterine muscles; that’s why the muscles can’t contract properly.. The deposits are basically bleeding inside the muscles, interfering with their normal job.. These deposits keep adding up every month, making your uterus enlarge, giving you the heavy flow, which also made me light headed.. The only way I could get it to stop was to have the hyst, but then again, I had used every thing they offered me to get it to stop.. Have they offered you any other choice of treatments to try? Problem is, they are limited, like with Endo.. I wish I could be of more help to you.. I hope you get feeling better.. Take care; Sylvia
