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new here with unbearable pain, adenomyosis new here with unbearable pain, adenomyosis

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Unread 04-09-2002, 09:44 AM
new here with unbearable pain, adenomyosis

Hi to all! This is my first post but I've been here a LOT reading what everyone has to say. Here's a quick background about me. I'm 33 with a wonderfully understanding husband. My first son was a c-section and my second was natural, they are 9 and 6. I found out 2 years ago that I have endo and it seems to get increasingly worse every month. About 8 months ago my uterus seemed to swell like I was 3 months pregnant and would hurt every period. About 2 months ago the pain got so bad I thought I was going to fall apart, and I consider myself really tough when it comes to that. I cried in the doctor's office trying to explain the pain, not my style again!
My doctor tried me on 2 different rounds of strong antibiotics thinking it was an infection and also found a fibroid with an ultrasound. The antibiotics did nothing and all tests came back negative so now she is saying it is probably adenomyosis which seems logical. I'm betting that fibroid turns out to be an adenomyoma. The pain is getting increasingly worse and due to my husband's work schedule and my doctor's vacation schedule, I have to wait to have my surgery till April 25th. I will have a TAH and they will clean up any endo they can find.

My doctor called in a prescription for Vicoprofen and that worked for a while but now the pain has gone beyond that. I take my meds and heating pad to work every day.

What kind of pain are people experiencing that have adenomyosis? And did the pain become extreme all of a sudden?
Cancer runs in my family, mother died of breast cancer at 51, and I'm really concerned about this! What if all of this waiting for everyone else's schedule to be free ends up meaning cancer has had an extra month to attack my body?

Can anyone recommend a drug that works really well for severe pain and yet they can still function to work and also take care of their family?

I know all of the medical reasons behind adenomyosis but I wonder if my pain level is the same as what any of you are experiencing or have experienced.

I know I have a lot of questions for my first post but you all seem to have so much to offer and I really don't have anyone else to talk to about this. I hate to come across as a whiner! I can't stand people like that so I don't want to become one!!! :-)

Please help!!
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Unread 04-09-2002, 09:54 AM
Your Pain

So, sorry to learn about your pain. I have considerable pain but not continously. Yesterhay upon the suggestion of a post-op sisier, I logged onto and did alot of reading about pain and hysterectomies, etc. They mention ibuprofin for pain, but I cannot remember the dosage (it was high though). You may want to call your physician and ask if this is acceptable. Ibuprofin as an anti-inflammatory and therefore may gove you relief, but I do not know for sure. Good Luck to you. Remember it will all be over soon- Only 16 days to Go!:time2:
Unread 04-09-2002, 10:20 AM
Re: Your Pain

Originally posted by SMM
So, sorry to learn about your pain. I have considerable pain but not continously. Yesterhay upon the suggestion of a post-op sisier, I logged onto and did alot of reading about pain and hysterectomies, etc. They mention ibuprofin for pain, but I cannot remember the dosage (it was high though). You may want to call your physician and ask if this is acceptable. Ibuprofin as an anti-inflammatory and therefore may gove you relief, but I do not know for sure. Good Luck to you. Remember it will all be over soon- Only 16 days to Go!:time2:
Let me add I am sorry to hear of your pain as well. It will get better.

As for the Motrin: 800 mg is the usual dose and it can help with some of the pain. Best wishes.
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Unread 04-09-2002, 10:29 AM

I am sorry about the pain. Hang in there. But also, please call your doctor if you need different pain meds to get you through.
I wanted to give you a little comfort about your cancer concerns. Turns out I had cancer in 3 different areas: Endometrial (Uterine Lining), and Carcinoma in Situ (means contained) in my cervix and vulva (lower labia.) Guess what? I had no pain at all. I also had 3 cysts a fibroid, adhesions and adenomyosis (the last 2 were discovered in sugery.) So try not to worry too much about cancer. The gynecological cancers can be scary. But fortunately for most women it only strikes about 1%-2% of us.
If you have further concerns please feel free to join us on the Cancer Concerns Forum we have lot's of great information and support there.
Keep reading and keep posting. We are here for you.
Unread 04-09-2002, 10:46 AM
new here with unbearable pain, adenomyosis

Thanks for the help. Unfortunately, the pain is so intense that I've had to use the Vicoprofen which is a combo of Vicodin and Ibuprofen. I've called the doctor to see if they can prescribe anything stronger to get me through.
Thanks for the cancer advise. It's just until they go in and find out everything that is going on, I have all of these thoughts running through my head. I think I'll take you up on the offer to visit the Cancer forum and see what everyone has to say about their experiences.
Just having other people to relate to really helps!! I know I only have 16 days, but it seems like an eternity!
Unread 04-09-2002, 10:48 AM
Mean old endo!!

I have been reading this site for several weeks now and this is my first post. I had to repsond to you! I was diagniosed with endo 14 years ago. I have tried many treatments. They work for awhile but it always returns!! I too have constant pain. The level and severity have changed over the years depending on the treatment I was recieving at the time. My pain doesn't sound as bad as yours but when it is constant it drags you down. I have found taking 2 Aleve every 3-4 hours helps. For some reason doctors are reluctant to prescribe pain meds for endo. Hang in there your date at the castle will arrrive soon. I have been waiting 6 weeks for my visit to the castle. I look forward to being pain free!! Feel free to email me! I live in Niceville! We are practically neighbors.

Unread 04-09-2002, 11:18 AM
new here with unbearable pain, adenomyosis

Same Here!

I have been experiencing the same thing, the doctor thought I had fibriods, and said my uterus was as big as a 8 week pregnancy, that was last year at this time.

Well just this past November it started getting bad, just like you have described it, until last month, the pain was unbearable. Like you I can tolerate alot of pain, I was taking 6-200mg of ibuprofen, that eased the pain so at least I could get up and walk and change my pad every half an hour.

Well I called my doctor and told him he has to do something or I will get a second opinion. He got me in and was shocked my uterus had grown to a size of a five month plus pregancy, and couldn't believe how fast the fibriods grew. But he wanted to double check, because adenomyosis is commonly mistaken for fibriods.

Had the ultrasounds done and sure enough it was adenomyosis, and he said my uterus is very large. We scheduled a surgery right away for the 22 of this month.

But what I feared the most was my next and last period. Well I called for pain killers and they prescribed me naproxen 550 milligrams, I told them they won't work (they are equivalent to 800 mg of ibuprofen) sure enough they didn't work, oh what hell. I called back and told them they are working after I put two of them down already, which you are only suppose to take two a day. And they prescribed me Darvocets, which really helped they relaxed me and though I still had pain, it was not intense, it was tolerable.

So hang in there, you don't have many more days, every time I am in pain, I look at my surgery date and it makes me smile.

I will be here before we know it and over before we know it, we made it this far, we can make a couple of more weeks!



TAH 4/22/02 - Adenomyosis & Very large Uterus

This is the second time I have done this, I posted my reply, but I have it in as a reply now, ooooppppppppssss
Unread 04-09-2002, 11:24 AM
new here with unbearable pain, adenomyosis

Hi to all!

I had my TAH/Burch repair almost seven months ago for adeno.

I was so lucky, because I never experienced any pain even though my uterus was 10 week size at the time of my hyster.
I did however, have flooding periods with huge clots which caused me to be anemic.

I hope all works well for all of you LIW !!!
Unread 04-09-2002, 11:43 AM
new here with unbearable pain, adenomyosis


Welcome. I don't have the same problem, but I certainly feel for the pain you are going through. Ibuprofen (or Motrin) 800mgs is a big dose. It is the perscription dose so it is not an overdose, but please remember that it can upset your stomach and if used for too long can cause ulcers. Also it can affect clotting so please make sure that your MD knows you are taking that big a dose before surgery. He may want you to stop it several days before. Also Naproxen is not the same drug, although it has similar anti-inflamatory properties. Can be bought over the counter as Aleve, also has similar blood thinning properties. Again, make sure your MD knows you are taking it before surgery.

You might want to give your Doc a call and ask about Toradol for times when you need to be up and around and able to function. Some people actually find that they get more pain relief from Toradol than from the narcotics. It might be worth a phone call to him. It is available only by perscription.

Just some suggestions. Hope they find something to get you through the next couple of weeks.

Unread 04-09-2002, 02:12 PM
new here with unbearable pain, adenomyosis

Welcome!! I too have adenomysois and am having a hyst in 7 days!! I too am in severe pain for most of the month! I have terrible cramping and stabbing "knifelike" pains, I have heavy periods, but not every month, with large clots...I have very painful intercourse and that pain last 2 days! I do not have endo that we know of! Be careful with the pain meds to your doctor...mine told me absolutely NO IB profin OR aspirin for TWO weeks before surgery..they are blood thinners! Please feel free to email me with any other questions on adeno..I have done lots and lots of research!

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