Adeno - what to Do

This is my first post. I had my post-op appointment this week from my recent diagnostic lap. Was told I have adenomyosis. I had never heard of this. I was given 2 options- Lupron for 6 months or a hysterectomy. I could also take the Lupron for 3 months just to make it to the summer (I am a teacher) and then have the hysterectomy.

I am 36, have never been married, and have no children though I have always dreamt of having a husband and children. Now this. I started my period at age 10 and have been progressively more miserable ever since. My periods now last 3 weeks normally with severe cramping, nausea, vomiting, passing clots, back pain, etc. I take 12-15 advil a day just to go to work. I know I am killing my liver.

So, do I go ahead with the hysterectomy, take shots that will send me into menopause, get a second opinion? I just don't know what to do.

I would get a second opinion if you still want a family. Before going on either lupron or Hysterectomy I would see another doc. Side effects for Lupron out weigh the good in my mind, plus it doesn't fix anything. But my advice is get a second before you commit to anything.

My diagnosis was suspected adenomyosis( my ob said only the pathology report confirms it), 2 small fibroids, a touch of endo, and recurrent ovarian cysts. You have many more options than what your dr has given you. Don't jump into this decision. I have tried BCP in every formulation, The patch, seasonale, Nuvaring (which was by far the best). We tried ablation which was VERY effective, I had a great summer until the bleeds stretched back out again, it however makes it dangerous to carry a baby which may be an issue for you? The last procedure was an exploratory lap just to look around and see if there were any discernable quick fixes. It took me 6 years to travel the road and I just had a TAH-RSO 2-8. I know I tried everything to feel better, I researched until I found a doctor I trusted who practiced at a wonderful facility, and when the problems became worse even though I was on the pill, I was at peace and called my ob-gyn and said "let's do it". I knew I had done everything in my power to feel better. It was the right time. I was also able to find a plastic surgeon willing to coordinate surgeries and had abdominoplasty too! FYI 5 days out from surgery, no pain meds and back/leg pain gone!! Take your time, do your research, find a dr willing to go the distance and try everything so there are no regrets later.

Good morning! I have a link here to a page that has several links to adenomyosis information:
http://www.hystersisters.com/vb2/link.php
This is a page I found on the internet:
http://www.endometriosistreatment.or...enomyosis.html
Unfortunately the only cure for adenomyosis is a hysterectomy, however, adenomyosis can only be definitely diagnosed by organ pathology-which means post hysterectomy. I have read that an MRI is pretty accurate too, though. And I have to say that when I had my endovag ultrasound, my uterine muscle, which is supposed to look kind of like stripes, had what looked like knots on a plank of wood. Nobody would tell me what that was and nobody would let me read my ultrasound report myself (I should have been more assertive). So, having said all that, what I would recommend is to list what you want, list what you are willing to live with, research all your options-find out what is available and what it does to you, and then get more opinions, even more tests like an MRI, to help you decide.

Oh dear! I tried the links. The first one takes you to "resource database" (dunno how that happened ) but if you go to "search resources" and type in 'adenomyosis', and click on 'perform search' that will take you to the page I intended. Sorry about that!

Hi there I agree with the previous posts! Adenomyosis is like endometriosis except the endometrium grows INTO (like an invader) the uterine muscle from the inside. Then you have bleeding INSIDE the muscle of the uterus causing pain. My gyno said my back hurt so much because uterine pain is often felt in the lower back, much the same as back labor. The only CURE is hysterectomy, however I MANAGED adeno for 6 years with the pill (Less growth of endometrium, shorter bleeds) and ablation (lighter bleeds). I had six years and know that the choice for surgery was mine. When the back pain came back even while on the pill, I had the hyst. I felt more in control that way I guess. A hyst was not happening to me, It was my treatment decision. You have choices. Good luck!

Hi magdix108,

I'm sorry your are having these troubles. I did a 3 month lupron injection (prior to an endometrial ablation/myomectomy) and did well on it. I did have headaches which were pretty bad for a couple weeks, but they improved as my body adjusted to the change in hormones. I had hot flashes too, but they were quite tolerable and very, very well worth the trade-off for me to avoid my horrific periods for a while. I'm surgically menopausal now and (for me) the Lupron wasn't near as bad as the real thing.

My ablation failed due to my adenomyosis. The adeno embedded in the uterine wall still bled and became trapped behind the scarred-off uterine lining, causing disabling cramps as the uterine muscle tried to expell the blood. I do think very highly of endometrial ablations tho, as I know several women who've had success with the EA completely stopping, or significantly improving their menstrual bleeding. If adeno is only a "suspected" diagnosis then it still might be worth it. Because the lining of the uterus is destroyed, however, it is not recommended for women wishing to retain their fertility.

I have read that some women with adeno are finding success with the Mirena system:
Article about Mirena & adenomyosis
Mirena - Freedom every month
The way I understand it, the hormone it provides works mainly right at the uterus instead of through your system like BCPs do. It can thin the uterine lining so there is less to shed each month. Lighter periods often are less painful. My sister has it and only needs a pantyliner now. The literature says it is suggested for women who have given birth, but it doesn't exclude those who have not. My sister has not had children and was still allowed to have it, as she is looking to preserve her fertility at this point.

I hope you find something that works for you and I agree with the other sister who recommended a second opinion ~ ~~ always a good idea when facing major medical decisions.

Sending best wishes & gentle s your way.
Beth

DON"T do the Lupron if you don't have to! i know everyone's system reacts a little differently, but my case was terrible! The headaches caused me to miss so much work it's a wonder that my employer kept me. ( they were wonderfully supportive) The hotflashes were bearable, but the worst had to be the headaches and the mood swings...they were crazy. My mom says that I was a different person on the Lupron. She said that my family was afraid to talk to me a lot of the time, for fear of upsetting me so badly.

I am so sorry that you are faced with such a difficult decision. I was diagnosed with having Adenomyosis after an Endometrial Resection in which my doc sent a biopsy of my muscle wall to the path lab. It came back as Adenomyosis. Up until that point, I had no idea I even had Adeno. My menstrual cycles are horrendous and progressively get worse as the years go by. The first few days after the resection I was really happy, I was hoping I would not bleed for a while and that my periods would get some kind of regularity without the heavy bleeding, clotting and pain. But before I even stopped spotting from the procedure, my monthly came and it was worse than before. I know there are a lot of women who have had good results from this type of procedure, unfortunately because of the Adeno, I am not one of them.

It has taken an incredible amount of research and soul searching to come up with my decision. My doctor and I tried everything to be proactive but conservative in treatment. Nothing worked. Lupron from what my understanding is, is just a "quick fix" for those of us with Adenomyosis. I personally opted to not take the Lupron. I decided what's right for me is a hyster. It's a tough decision for anyone to make and I wish you the best of luck. My suggestion is also, do the research, find a doctor you trust, check out options that may be available to you and make the decision that you feel is right for you! Good luck to you!

I had undiagnosed adeno discovered when I had my hyst. I agree with many of the posts above. Do go for another opinion, try other options first, a hyst for me was only mentioned quite a way along the path of treatment- to be honest by the time it was talked about, I had sort of realised it was by then the only way forward- I felt very much at ease by it at that point.
I was diagnosed with endo when I was being 'treated' for infertility a long time ago now when less was known about it. But think - if I had been offered a hyst then I wouldn't have had my lovely daughter who is 19 in a few days time.
Personally I think 36 is too young to go ahead without a second (or third, fourth...) opinion, especially as in your heart you would still like to go ahead and have a family.
Best wishes.