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Adeno related hysto... will it help all the symptoms? Adeno related hysto... will it help all the symptoms?

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Unread 01-31-2012, 11:18 PM
Adeno related hysto... will it help all the symptoms?

I've always had painful periods, since they started when I was 12. From the sounds of the posts I've read here, that is a common with adeno. I was using birth control bill to control pain, (it was of limited help, but better and somewhat regulated) however developed a clot which moved to my lung, and had to stop hormones.
Finally got referred to a gyno, who FINALLY figured out what was wrong with me... adeno. I had never heard of it before. In highschool I was diagnosed with IBS. I have sciatic nerve problems, which result in pain all the way from hip to toe, depression anxiety which is being treated with anti depressants. I'm exhausted all the time, and am taking iron to make up for the blood loss, but which makes the IBS so much worse. I have huge hemorrhoids, which are constantly bleeding and have had to wear pads to catch that blood too. My lower belly has gotten so big in the past year, I no longer have any waist, and nothing fits. I've gained over 30 pounds since the clots, however have not changed eating habits. I've also suffered from migraines for many years.
Can anyone tell me... have some of you had these symptoms as well? How many could be related to the adeno? And will some/all of them improve after surgery? I'm not scheduled to see my gyno before surgery, can I ask about having roids removed when I get to pre op? Or do I ask my family dr? I can't take it any more! I can't wait for surgery to get here... end of March!!!
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Unread 02-01-2012, 04:48 AM
Re: Adeno related hysto... will it help all the symptoms?

reading your post is almost like reading my story,i was diagnosed with ibs early on too.My periods have never been normal from the moment they began.The flooding you describe is a classic symptom and so embarrasing many a time it`s caught me out.I have found that my ibs has been made worse the larger my uterus has got,the nurse did say that it puts huge amounts of pressure onto the bowel.

I look 8/9 months pregnant and am often asked how much longer i`ve got to go and if i`m excited.It`s got so much worse in the last 18 months.I don`t expect to have a flat stomach but it would be fantastic to not have to walk around looking like i`m about to burst.

I also have endometriosis,there is a section for endometriosis/adeno on here might be worth a look.

Obviously i can`t tell you what to expect after surgery only what i`ve been told.
Unread 02-01-2012, 07:14 AM
Re: Adeno related hysto... will it help all the symptoms?

Hi adtears!

Bless your heart, you have a lot going on there. I have no idea what symptoms your surgery will resolve, but I hope it helps all of them! I had adeno, too, but I didn't even know it until after surgery when I read my pathology report. Mine must not have been severe.

I don't think it hurts to ask during pre-op about the 'rhoids, but I'm thinking that may have to be either a general surgeon or a GI specialist. Perhaps they can at least advise or refer someone.

It's so hard to get physically motivated when you're in pain and exhausted. Maybe on days when symptoms are calm you can get some exercise in-- anything, like walking or dancing or doing something you enjoy.

Feel better soon! Keep us posted!

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Unread 02-01-2012, 07:38 AM
Re: Adeno related hysto... will it help all the symptoms?

Wow! i hate to say it, but I love reading posts like these. Not because i would wish Adeno on anyone. but because i can think - hey I'm not nuts!! and OMG there are other people who get it! I have those symptoms I dont know if all this can be attributed to Adeno. but if it isnt then there are a bunch of us living the same life.

Here's hoping we get fixed!! wouldnt that be WONDERFUL!!i mean we may still have the roids and a few minor things, but for the most part we could be fixed. (sorry i am rambling but i actually have some hope for once and i am kinda excited) I dont expect to have a flat belly either, but it sure would be nice to be folding laundry and not think that there is no way these are my jeans because i am not that big! i cant wait to be able to walk further and exercise again> the past two years and especially the last few months i have gotten so much worse.

i have a lot of pelvic bone problems as well, it shifts and twists. makes it hard to walk some days. I cry a lot from pain and frustration.

I wish I could hug you! you have made my day!
Unread 02-01-2012, 09:26 AM
Re: Adeno related hysto... will it help all the symptoms?

I can't speak to the IBS, but I can assure you that after your hyster you will never have a period again (unless you keep your cervix) and most of the pain and stress will go away.

I can speculate that the IBS will improve just because there will be less pressure from the uterus - but that's just a guess.

I suffered from migraines pre-op and still do. I kept my ovaries, but this doesn't seem to make a difference. I ran an informal poll back in October and the results were mixed. It didn't seem to matter one way or the other about the ovaries - basically it's a crap shoot and I hope you have better luck than I did.

Best wishes
Unread 02-01-2012, 10:13 AM
Re: Adeno related hysto... will it help all the symptoms?

I was dx'd with adeno after my surgery and have had most of the symptoms you described. It's too early to tell about the migraines (still have them, but hormone levels/HRT are changing, so...), the IBS, and the sciatic nerve-type pain, but I can hope! About the rhoids - miserable! Absolutely miserable! Ask about getting them taken care of!! You may need to see a colo-rectal surgeon, but they can either band them or remove them. No point in putting up with that, imho.
Unread 02-02-2012, 08:11 AM
Re: Adeno related hysto... will it help all the symptoms?

I am supposed to be keeping my cervix and my ovaries, they are only removing the uterus... does that mean I will still get my period?
Unread 02-02-2012, 08:44 AM
Re: Adeno related hysto... will it help all the symptoms?

From what I understand there is a slight chance of spotting during your new "cycle" if you keep your cervix and ovaries. I think it is 5% or so. I have endo and never knew about Adeno till recently and wonder if I have that as well. I hope that your sugery goes well and resolves your problems!
Unread 02-02-2012, 01:30 PM
Re: Adeno related hysto... will it help all the symptoms?

I have IBS and the Dr and I talked about it before surgery. He said IBS can feel like uterine problems and uterine problems could feel like IBS so sadly no promises where made there. I am only 4 weeks post op so my bowels are not normal yet but I am hoping that once the internal swelling goes down it will.
Unread 02-19-2012, 05:15 AM
Re: Adeno related hysto... will it help all the symptoms?

hi,i`m now 16 days post op and whilst it`s still early days i honestly haven`t felt this good in years.i only took 1 pain killer post surery as i could handle the pain of surgery.It`s so nice walking around and not dragin a bowling ball bowels are so much better than pre-op i guess the weight of the uterus combined with the pain meds made everything so much worse.please make sure you get some good stool softeners for afterwards.there is hope.hugsx

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