adenomyosis, finally diagnose, waiting to see what is going to be done !

I have had chronic pelvic pain for two years, have had two laps, but nothing apparently found, except bowel and uterus slightly attatched to each other. Gynea was baffled as to what causing the pain. Even I started to think its in my head. Went to my gp for strong pain killers who then mentioned that I show signs of adenomyosis - after convincing consultant, he sent me for mri.. he wrote to me saying it concluded adenomyosis. Am seeing him next week to discuss options. I can't have coil or hormone pill as react badly. Anyone else going through the same x am in constant pain, have hot water bottle burns all over tummy. X

Hi I had bad pains for a couple of years and at one point thought it was ibs until my periods starting going on for longer even though I had the coil fitted, had an ablation last May to stop the bleeding which it did and was put on the pill but my pains got worse each month just like I was in labour, I went to see my consultant in January as the pain was getting unmanageable and he suspected adenmoyasis but coundnt confirm this as its normally confirmed during pathology after a hysterectomy. I had my op on 14th feb and will be 4 weeks post op tomorrow and feel so much better with it gone, my bowels and bladder are also working so much better. I got the confirmed diagnosis a week after my op and was pleased that it was what the doctor suspected and now I can get on with my life with no more pain.
I hope you get yourself sorted out soon as its not nice being in so much pain. Xx

I'm glad you got a diagnosis. I understand how frustrating it can be to have issues and no one knows what they are.

I opted not to have a lap a couple years ago because when I asked, my GYN said they only find a cause for pain in about 40% of the surgeries. At the time, I wasn't quite ready for surgery with those odds so I reluctantly tried the Mirena IUD. It made my periods like a "normal" person's period so I was no longer anemic, but I had constant spotting, even after a year and a half. Once I had it removed, I was surprised at how much pain I had again. I didn't remember it being that bad.

I decided to get a hysterectomy sooner rather than later, partially because I didn't want to spend my summer this year in recovery. I am waiting on pathology but I am hoping it comes back as adeno so I finally know for sure why I was such a mess.

Good luck with your appointment and your decisions.

Thanku leagle and dancing popcorn. I think that it will probably result in hysterectomy. Is the op really bad ? How long were u in hospital. I can't imagine what it would be like to be painfree.. it even hurts my tummy to sneeze ! The one thing I am bit dreading with hyster is having to have catheter after surgery, did u have one ? X

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Originally Posted by lara78 Thanku leagle and dancing popcorn. I think that it will probably result in hysterectomy. Is the op really bad ? How long were u in hospital. I can't imagine what it would be like to be painfree.. it even hurts my tummy to sneeze ! The one thing I am bit dreading with hyster is having to have catheter after surgery, did u have one ? X

Hi , I was told they thought I had adenomyosis after years of not knowing what my pain was from. I had my TVH on the 7th so still in early stage of recoverey, but I can tell you I already feel like a new women, still alittle sore, but nothing like I usually feel, painfree is wonderful.
I was in hospital for 2 and half days, the day of and day after were the worse for me, I had a catheter that came out the day after the op, and I have to say, for me, the packing and that were the very worse parts, but and here is the but, they only stayed in until I was up too getting out of bed and moving round, once I felt I could do that, they removed them and I pee'ed on my own, which was abit sore , at first, .......... for me, I have to say having this op was the best thing I could have done, wishing you all the best in a speedy recoverey

I also have adenomyosis. I was diagnosed on 2/29/12. My gyno said my uterus was very large with an extremely thick lining and they found a cyst. He said I was not a candidate for ablation and that my only sure way to correct the problem would be hysterectomy so I am going in for total hysterectomy on May 17th via Da Vinci providing my uterus isn't too large. I hope you get your answers soon because I know how frustrating it is waiting. Keep your chin up! It'll be fine.

	Quote:
Originally Posted by lara78 Thanku leagle and dancing popcorn. I think that it will probably result in hysterectomy. Is the op really bad ? How long were u in hospital. I can't imagine what it would be like to be painfree.. it even hurts my tummy to sneeze ! The one thing I am bit dreading with hyster is having to have catheter after surgery, did u have one ? X

Hi the op was the best thing I have done even though I'm only 4 weeks out and still recovering I feel so much better. I had TAH/BSO and yes it was sore but it gets better each day. I was in hospital for 5 days and well looked after I did have a catheter but it was removed the 2nd day once I could get out of bed ok and it wasn't that bad they fit it whilst your still under and the removal was ok.

Good luck and hope you will be pain free soon. X

Omg, it all sounds so scary. U ladies seem so positive though x x thanku

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Originally Posted by lara78 Omg, it all sounds so scary. U ladies seem so positive though x x thanku

It's not that scary and you have to stay positive for a smooth recovery. I'm making the most of my 8 weeks of work and enjoying the nice English weather.

I had no clue I had adeno. I had my surgery because of fibroids, bleeding and pain. After they got it out the path report said adeno. It also turns out I had adhesions all over the place.

I am a very slow healer because of other health issues. I still have a little tenderness but am able to go back to doing aerobics (something I couldn't do for the last couple of years due to pain and fatigue). I feel much better than I did before surgery.

Since I didn't know I had adeno I never researched what other options you have but it sounds like there isn't much that can be done but take drugs for pain.

The catheter is the least awful part. They put mine in while I was under and left it in until the next morning. It was painless coming out. It was nice to have it in because I slept much of the day and didn't want to have to get up to go. Properly placed catheters don't cause discomfort for most people.

I was in the hospital from 6:30 am on Tuesday until 6:30 pm on Wednesday. The worst part of the surgery was the 2 months I had to wait to have it. The first few days you don't feel all that great but then it just keeps getting better after that. The big thing is to take care of yourself and follow your dr's. instructions to prevent complications. The majority of women do fine as long as they don't overdo it too soon.