Gyn says it's probably adeno??

On Friday I had my last appt with my gyn due to hormone issues. I have fibromyalgia and IBS that both flare real bad around ovulation and my period. I've always had problems with my periods. They started somewhat painful, but pamprin always helped. As I got into my late 20's they've just gotten worse. I will either have diarrhea or vomit the day before the flow starts. And the pain is horrible! I can handle the bad cramping, a vicodin and heating pad or hot bath helps that, but the buring and ripping can't be helped. It literally feels like my uterus is being ripped from my body. My flow has gotten heavier, but is still fairly normal, meaning I can use regular pads fine. The pain is so bad I can't leave the house, let alone work. But now I get cramping like my period around ovulation. My uterus cramps for an hour or more after sex (sex itself doesn't hurt) and it seems like every day or every other day I feel bloated and heavy/full (not related to IBS)

I had a lap done in nov 2005 to see what this right sided abdomenal pain is, came up clear. No intestinal issues either. They thought it was either a cyst (nope) my appendix (nope) or something in the intestines (nope.) Now they have no clue, but the pain is now only dull most days and sharp rarely. They didn't see any endo, she said my uterus is tilted quite far forward, but it's not an issue.

Now she said for the pain she doesn't want me living like this until menopause (my mom is 52 and still regular!!) She started me on Lybrel (the pill where you don't get any periods) on Friday. But today I feel like my period is coming (it is due this coming weekend) I just feel REALLY full and somewhat crampy. She said if this doesn't work she wants me to think about a hysterectomy. She asked how I felt about that and I said if I wasn't so scared about the recovery and not knowing much about how I'll be afterward I'd have the surgery today to yank the darn thing out! But i'd like to try the pill first just in case.

Now she said she is positive (not 100% but pretty sure) it's adenomyosis. But I see that most people who have it have heavy flows? Do you have to have heavy periods or can you just have the full feeling and real painful periods?

Has anyone had a hysterectomy for just pain?

There are always going to be people who don't have all the symptoms of any given illness/disease. So you could have adeno even if you do not have the heavy flow. We have several Adenomyosis Resources you may want to read through to learn more about adeno.

There are women who do have a hysterectomy soley because of pain. My aunt is one of them. I think you are wise to try any and all other options first and I would recommend at least a second opinion before scheduling a hysterectomy.

A hyst is a major, irreversible surgery that is not without its risks so you want to be 100% sure it is the right option for you before scheduling one.

Many best wishes to you for whatever you decide is right for you!

I didn't have a heavy flow. The pain was the reason I had my hyst...and they found out that I had Adeno after surgery. My uterus was enlarged (the full feeling) and I had cysts on both ovaries. The pain was managable for years but the last 8 months it got increasingly worse. To the point sex was out of the question and work and everyday things were not getting done. My belly grew to the point that I looked 9 months preg.

The hyst was the very best thing. I felt so much better from the moment I woke up from surgery. ( I still had pain but nothing like the pain I had before surgery/ after a couple of weeks I felt better than I EVER have.)

Best of luck to you.

I feel like I've tried everything. Many different BC pills, chasteberry/vitex, vitamins, calcium, raspberry leaf tea, OTC pain killers, Rx pain killers and now I have to take narcotics for the pain. I've tried relaxation, a hot bath, heating pads etc... They all somewhat help to a degree, but not enough to even move much. She said she'd recommend Lupron to most people, but worries about me taking it due to how my body reacts to side effects due to the fibro.

I haven't changed my diet but my belly looks pregnant. I don't think it's just diet/exercise, but I don't know if it's my uterus either. I have an MRI this afternoon, so I guess we'll see if it's just fat or not!

Of course I feel horrible because my gyns office just told me yesterday that they are dropping my insurance sometime soon!!! I just don't know what to do. She is the only one in the area I trust and like. I just hope that if I have to get this done, she can get me in before she drops the insurance. I can beg/borrow/steal to pay for office visits but not a surgery!

I would definitely talk to her about the insurance thing. I had a doc that I really liked - she did my lap. I called her to schedule my hyst but was informed that they dropped my insurance. It's quite stressful trying to find a new doc. I have an appointment tomorrow with a new one and I'm just praying that I like him and that we are on the same page. I want a Hyst - I've had almost a year to think about it since my lap and I am so ready - my adeno is only getting worse.

I too have tried all the natural stuff - vitex, no caffiene, no alcohol, no wheat, no dairy etc. I've been on high quality fish oil for 5 years and take all other kinds of anti inflammatory supplements. Plus I'm mostly a vegetarian ( a little fish or turkey - like 2-3 times a month) and do lots of yoga. None of this affects my pain level. Vicodin and heating pads are the only things that make a dent. I just spent a few weeks on an island in the Mediterranean with a heat pad in my bathing suit - lovely.

So nothing has helped my adeno over the years. That being said I think you need to be absolutley sure this is what you want. My old Doc wanted to do it last January and I'm glad I waited and found this site and have very open conversations with every woman I know who has had a Hyst. Even though My doc dropped my insurance I'm glad I waited. Now I feel grounded in my decision to have the hyst. Now lets just hope this Doc will give me what I want! He's supposed to be a specialist with Endo/adeno and minimally invasive surgery. My hunch is that he'll be a better Dr. than my previous one.

I'm 42 today ! gotta change my signature...

One of the reasons i had my hyst was for adeno. i had adeno for years but wasnt till the last two it was a heavy flow.
good luck
hugs
Lisa

Tammy,
Had you ever tried Lupron for the pain?? They are suspecting adenomyosis with me. Have pain constantly, mostly uterine and at times have it where the knives are in there - seems like I am always irritated down there. Sure does affect your life. My periods have been gradually getting worse. Awful cramping and more clotting than anything and losing a lot of tissue. Were your bowels affected also?? I have IBS and that time of the month was always bad for me but since the constant pain has started, nothing feels right anymore. Seems like there are many people out there like us!
Monica

MonLee - It seems like you and I have the same thing going on. I wonder if I have IBS too. My dad does - maybe it's hereditary. I do have the bowel issues when I have my period as well.

No, I've never tried Lupron because I've heard too many horror stories about the side effects. My Chinese Medical Dr. once told me that she would embrace any mainstream medical route I took but she would throw herself in front of me if I decided to try Lupron - she said it messes up your body too much and takes too long to recover. Everyone is different though - I don't reacte well to hormone drugs - Natural progesterone messed me up!

I finally have my hyst scheduled - I'm so ready. I got a second opinion and my uterus and cervix are going Dec 11. Only 2 more periods to go!

Tammy,
I actually started lupron last week - my doctor has been so good with me and really wanted me to try it. Even though the side effects can be awful, I actually found a lot of people who have done really well with it on this site. For me, so far so good and I am just hoping the pain goes away. If it does, we'll know that a hyster is just what I need!! My TAH is on Nov 29 and I am going for a second opinion at the end of this month.
Good luck and I hope you don't mind if I have more questions!
Monica

Monica - I forgot that you had actually started the lupron - can't remember if I read that in this thread or another.

One of the reasons this community is so great is that you were able to find and talk with people for whom this drug has worked/is working. The internet is so great! I think my TCM Dr. just scared me about lupron so I never even considered it. It's funny - I'm a very strong proponent of Natural and Traditional Chinese Medicine but maybe quick to have surgery . I think if I were younger I might try some of the more allopathic options but I reacted strongly to several tries of natural progesterone and BCPs make me crazy (and prone to crying jags).

I was so nervous before I had my Lap last Dec but not so grounded and ready to have this Hyst. I'm sure as the date gets closer I'll start freaking out again. I have 2 more cycles in which to be reminded why I'm doing this.

I researched IBS after reading your post yesterday. I bet I have it too. I have to be so careful of what I eat (though I'm not - I LOVE food) or I can get pretty sick. A couple of weeks ago I was out to dinner at a Vietnamese restaurant and ate a little too much of my curry - I didn't think I was going to be able to get up and walk to the bathroom afterwords. I felt like crap the rest of the night! It got me to thinking of how more and more I have that reaction to rich foods. My husband would say that I've always been like that.