Possible Adenomyosis - Hysterectomy Options and Alternatives - HysterSisters
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  #1  
Unread 02-18-2005, 11:10 AM
Possible Adenomyosis

Hi!
Two months ago my GYN told me my recent ultrasound results showed an enlarged uterus with possible adenomyosis.
I opted to try BC pils and was put on a low dose form as I have high cholesterol and had high blood pressure with pregnancies.
Well, obviously the pills are not working as I have been bleeding for 2 months with a couple breaks here and there. But more bleeding than not. I see my GYN on Monday to follow up on how the pills are working. At the time of the US results I was also given the option of having the hysterectomy as well.

Ok, what brought me to her in the first place was for 6 months prior I was having Brown staining 5-6 days before my period and then a 7 day period. SO my internalist sent me for an ultrasound as she suspected fibroids. Well, this was in Oct. This ultrasound came back normal uterus, but showed a cyst on the left ovary. So, I was sent to the GYN. She did another ultrasound to follow the cyst which was gone and this in the US that showed the possible Adeno.

So, now I am wondering as I had time to absorb everything and research it all...
Why would one US show a normal uterus and 2 months later possible adeno and enlarged uterus. Could it come on this fast? Or is one incorrect. My only symptom was the staining before my periods. Always had cramps during my period. But i am not in extreme pain like I have read some are having adeno.

Just looking for advice. Anyone in the same boat? Anyone with thoughts on it all.

Thanks!
Gina
  #2  
Unread 02-18-2005, 04:40 PM
Possible Adenomyosis

HI Gina

I really do not have any experience with adenomyosis but wanted to share some articles in our resources that may be helpful.

http://www.althysterectomy.org/adenomyosis.htm

http://www.hystersisters.com/vb2/lin...n=browse&cid=6

Hopefully someone will come along to share their experience with adenomyosis.

  #3  
Unread 02-18-2005, 06:13 PM
Possible Adenomyosis

Adenomyosis is a hard diagnosis to make, because it's not easy to spot on an ultrasound with 100% certainty and the symptoms can be accounted for with other problems as well.

Adeno is sometimes seen on ultrasound as a thickened uterine lining, or a boggy uterus or just an enlarged uterus with no discernable fibroids. I'm sure that cycles can have a lot to do with how it appears at different times.

Cysts also come and go - so if the cysts have not been painful or caused any hormonal disruptions, there's generally no reason to worry about them as long as they're not complex.

Some women have cramping and severe pain with adeno, but not all do. Some have flooding, some just have never ending periods. My sister had terrible bleeding with her adeno, but not much pain at all.

Did your doctor discuss any other options such as ablation? I've seen that it's not always successful with adeno, but certainly more conservative than a hyster and less of a chance of problems associated with your bp & cholesterol.

You might also ask your doctor to try a hysteroscopy to take a look inside your uterus to rule out anything else like polyps which can also cause flooding (usually without pain) and breakthrough bleeding. Polyps can usually be removed during that procedure or with a D&C.

I would definitely discuss this with your doctor with special considerations given to your hypertension and cholesterol, as bc pills can increase your risk of stroke, blood clots and heart attacks.

Take care.
  #4  
Unread 02-19-2005, 08:38 AM
Possible Adenomyosis

Hi Gina,
I had the EXCACT same thing happen to me also. Although I have had pain during, before and after my period....basically most of the time. But as to the US with a cyst on my left ovary then almost a month later, the cyst was gone and the suspected adenomyosis. This happened so fast and was large that it startled the doctors who tried to do a sono-hysterogram but was unsuccessful. I had a MRI done last Wednesday to verify all this and are waiting for the results to come in. Because of my age and family cancer history, my doctor is suggesting a TAH. She said that they wouldn't be able to tell if it was adenomyosis for sure until they biospy it. Keep me posted if you want to about your situation as it sounds very familiar to mine and good luck.
Maureen
  #5  
Unread 02-19-2005, 11:03 AM
Possible Adenomyosis

Well,
I will definitly be discussing with my doc Monday as to looking more into it. She told me the only way it is 100% diagnosed is by having the hysterectomy and then looking at the uterus. I am just hoping she will be up to perhaps another ultrasound or MRI to make sure that there is indeed a good chance I do have it. I would hate to go thru surgery and then have them say everything was normal, esp If I were to end up worse than I was to begin with.
All she told me of was treating it medically with pills or surgically with the hysterectomy. At the time I was given no other options. She had asked if I had any questions. Well, at the time I was just trying to absorb everything. I did have her write down adenomyosis as I do like to research things on my own. Since I have seen her I have read all I can. It seems though my symptoms are mild compared to most. But then it could just be the beginning. I did notice that a lot on here that had adeno complained of frequent urination and fatigue. It is funny cause for about 8 yrs now I have been peeing a lot. I can go every 20 mins. I have mentioned it to docs before and they just shrugged it off. I chaulked it up to being overweight and perhaps a smaller bladder. But perhaps it is something to do with my uterus. I have also had the fatigue the past few yrs. I was starting to think it could be fibromyalgia as it does run in my family. SO who knows perhaps it is all connected to this.
I do hope I have more answers on monday from my doc.
Please if anyone else has anything to offer...keep the posts coming. It is nice to know there are others out there that can relate!



Gina
  #6  
Unread 02-19-2005, 11:59 AM
Possible Adenomyosis

Hey Gina,
I was also diagnosed with adenomyosis, basically by ruling everything else out. Our situations are different so not sure how much I can offer advice wise, just wanted to let you know that you are not alone and that we are all here for you. I would do as much research as possible, being careful to check the source of your information as there is always just as much bad information as there is good. Talk to you Dr and ask her about all of your options. The more information you have, the better prepared you will be to make a decision. Unfortunately, there was really only one for me with the severity of my symptoms and the fact that I can't take birth control without turning into a fire breathing dragon... I'm having my hyst on March 16 and can hardly wait!
Best of luck and lots of hugs!
Jen
  #7  
Unread 02-21-2005, 01:40 PM
Possible Adenomyosis

Hi Gina,
I'm scheduled for a hysto March 7 for adeno. I'm 33 and I've been battling with Dr's for the last few years for worsening cramps. I've been on so many different BC pills I've lost count and none of them have worked. They work for a couple months then my body would get used to them and I'd be right back where I started.

I know you're doing all you can to find out what you can. I just wanted to let you know your not alone. I'm sorry you've had such trouble.

Samantha
  #8  
Unread 02-22-2005, 12:21 PM
Possible Adenomyosis

Hi!
Thanks for your reply Samantha, as well as everyone else who has taken the time to offer their support. It means a lot.
I am 29...will be 30 this yr. I noticed you are in Tx. I am too!

Anyhow, I saw my GYN yesterday. I was on Levlite and that just made me bleed more. So, now she is going to try Micronor..the mini pill..progesterone only. I was on it after having both my kids and did well. So, if it does not work this time...something is really up! She said it probably is that I need a stronger combo pill but give my pregnancy induced hypertension history and current high cholesterol, she did not want to take chances there.
So, now she is giving me 2 months on this pill. If that don't work well then my only other option is surgery. I asked her about the conflicting ultrasounds and she said the first was done at a general radiology clinic. Her radiologist deals with GYN cases and can spot these things. My uterus is also 11 wks size. So, I am glad I was able to ask her more thsi time and understand it all.

Keep in touch and let me know how things go for you! Good luck with surgery!


Gina
  #9  
Unread 02-23-2005, 07:28 AM
Possible Adenomyosis

Gina,

You mentioned that you have had more frequent trips to the bathroom over the past few years and that your uterus is enlarged. Do you also have more stress incontinence? I do, from my enlarged uterus/fibroids pressing on the bladder. My GYN is sending me to a urologist to be evaluated for a bladder suspension done at the same time as hysterectomy. You may want to pay close attention to your bladder symptoms while you are trying this new medication. If you have these issues, discuss it with your doctor. If you need any bladder work done, it can be done at the same time and save you a second surgery.

I hope you get some relief with this new medicine. Hystersisters has been a great resource for me and has helped me to make a more educated decision. Good Luck to you!

maggiemay
  #10  
Unread 02-23-2005, 08:00 AM
Possible Adenomyosis

I was diagnosed with adneo. on Feb 4th. My uterus is enlarged. I took bc pills for along time. Now I have a iud and that does not help. I have severe lower back pain before my period and a week after. I will have my hyst. around the end of march first of april. I am 32.



Julie
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