[Stormster]

I know very few people have adenomyosis (it's sort of like Endo but rather than ON the muscle it's IN the muscle). I know at least one member has had it ....I do think the pain is probably like Endo.

Early this morning I had the first attack my Gyno assured me would eventually come. He has always been surprised I haven't had more pain and has been suggesting a partial hyst. but the pain was minimal so I didn't want to have unnecessary surgery.

Well let's just say it may be necessary now. I spent two hours this morning WRITHING on the floor. I couldn't tell where the heck the pain was coming from. At first I thought for sure my uterus but then i wasn't sure if it was intestinal etc. It was also in my lower back. Every five minutes DH would say "should we go to the hospital?" and I would say give me five minutes, give me five minutes. I was sure I had a kidney stone or an emergency ulcer situation or something.

Now i feel it must have been the adeno. If it was an emergency kind of thing I doubt a heating pad and advil would have helped.

I was wondering if this sounds to anyone with adeno or endo like an "attack" or if the pain even comes in attacks! I wasn't sure how to handle it and am petrified it may (probably will) happen again!

I think this may be related to the fact I was just weaned completely off prednisone and maybe it was indirectly keeping the inflammation down or something...

ANY help would be so greatly appreciated. Thanks

[Dickons]

Sounds like endo pain...

Talk to your doctor about OTC and prescription meds that can be used to manage the pain...

At home what helped me was: a) being proactive in taking OTC as soon as it starts; b) heat, constantly even when the pain lets up to not allow it to get worse; c) soothing touch by hubby, just gentle movement of his hand in the area that hurts; d) slow deep breathing, in through the nose, out through the mouth, look up breathing through childbirth. You have to focus on the breathing and it works. If you do a - d you can manage the pain to the point of being able to sleep which is probably the best way to stop an attack that causes you to writhe (exactly how I describe the feeling).

Kind regards,
Dickons

[Stormster]

Thank you Dickons just by the advice you gave it is clear it is related to the Adeno.

[jules17]

Storm, I don't know how I missed this this morning, but I am so sorry for your pain! My goodness, that sounds horrible.

I am also "in the deciding phase" for a hysterectomy. Due to a prior surgery, cysts and fibroids, my Dr. thinks I have major scar tissue going on. It hurts often, and completely stinks.

Please keep us posted on how you are feeling...

!

[qs mom]

I had adeno. I was a rare case because I never gave birth.

Anyway, for me, I took 4 advil (800 mg) every 1/2 hour for about 2 - 3 hours. I also had HUGE ovarian cysts, so I can't say which pain was which.

Heat helped to a degree. I also want to second the breathing and touch.

If your cycle is predictable - having adeno it probably isn't - but if it is, start taking the advil mid-cycle - 2 weeks before your period. It helps level the hormone levels along with reducing the swelling and pain relief.

I had a hysterectomy and it was the best thing I ever did.

[Saya]

Storm, no advice, but it sounds terrible! I'm sorry you're dealing with this.

[RavenSong]

Storm, I don't have any advice, as I don't know much about this condition. But I am going to read up on it today, especially since it sounds a lot like what I've been experiencing the past few years.

I've assumed what's causing me so much abdominal pain is adhesions from an appendectomy and ovarian cyst removal, but now I'm wondering. All I know is I really relate to that "writhing" pain level. It goes from my front to my back and is absolutely horrid.

I'm glad to hear the ibuprofen helped you.

[Stormster]

Thanks guys. The advil helped a bit but I'm still very sick. The cramping is just mild but now I have a migraine and I am very nauseated.

I'm going to run to the gyno tomorrow but i just know the only solutions are temporary: Lupron, birth control pills and the only real solution is a hyst. which is just not an option for me right now. I would have to get full time help for a month! But honestly I feel so awful I would even consider that.

Raven it is difficult to diagnose, the only reason mine was discovered was during a pelvic MRI. But apparently MANY women have it and don't know it. I'm sorry you have ever experienced the "writhes" man it was horrific.

DH and E went to my sister's. I stayed home.

[Hadley2]

That's horrible, I am so sorry to hear about that.

Until a better solution comes along, you may want to try naprox instead of the ibuprofen. Do NOT take them together or let them overlap. DD and I have found it to be stronger than ibuprofen for cramps. Generic of either works as well as name brand for far fewer pennies, too.

[qs mom]

Think about an ablatin. It was an option my doc suggested, but I had such poor results from everything else I had tried, I just wanted to be done. I was 40 and had been suffering since the very first time I got my period when I was 11.

Different pain relievers work differently for different people. As I mentioned ibuprofen works best for me. Better than even the Loratab they gave me after surgery. It works on the uterus on 3 levels - pain relief, anti-inflamatory and reduces the hormone that causes cramping. However, prescription doses are required and you need to have food or your will be nauseated.

Oh, how I remember needed 8 advil just to get out of bed.

I also had severe bleeding. When I went to my doc for the first time, she flipped out at how anemic I was. I was on mega doses of iron for a very long time. That was another factor in my decision for the hysterectomy. I truly felt better instantly. I was driving within a few days. The only thing I didn't do before the doc told me to was to lift anything. My son was in pre-k at the time, home 1 year.

Please seriously look at all your options for treatment and decide what is best for you. They all have pros and cons. I chose hysterectomy, felt great instantly. But I developed adhesions that needed to be removed when I have my ovaries removed this summer. 5-7 lbs of scar tissue had developed. My left ovary didn't even show on a sonogram because it was encased in scar tissue, that wrapped around my colon. Some people would think that the surgery was a mistake, I don't. Knowing what I know now, I would still have made the same decision. But, others I know wouldn't.

My friend has adeno too, she chose the ablation and she couldn't be happier with her decision. It's been about 2 years for her.

[Stormster]

Thanks. Isn't the ablation helpful for heavy bleeders? Fortunately (or unfortunately) that is not one of my problems. I'm probably going to try the pill and if I can tolerate it try and buy a couple more years before the Hyst.

But after the last 24 hours I feel like I would be begging for a hyst. pretty soon if it happens again and really why wouldn't it happen again

I've been praying all night if I can just feel good again I'll be a better person LOL (Like a crazy person!) I didn't know such pain was even possible!

Thanks for your support. Today I'm at abot 1/5 of yesterday in terms of discomfort so I will be able to function! Still feel yucky though.

[qs mom]

I did the pill, depo shots, d & c, premarin & provera. Premarin and Provera worked the longest for me. It's funny, I took menopause pills back then, and now I'm essentially in menpause - no girl parts left - and don't need the hormones!