I am scared!!!

HI everybody! I am 38 yrs old and new here and also am a wreck! I had recently came back from my OB/GYN and he told me I would need a hysterectomy. I had an endometrial ablation this past April for heavy and prolonged bleeding. Three months after my ablation I wind up having to go to the ER for severe abdominal pain. They thought it was my appendics because my white blood count was elevated. After putting me through a series of tests, ultrasounds, catscans, rectal exams, pelvic exam, ect, they found nothing, and set me home with antibotics and pain meds. They thought maybe an infection. The following month the same pain again....it happens every month around my period time. It is so painful I cannot function without pain meds. Feels like I am having a baby all over again with labor pains!!

I recently went for an MRI (which I went when I was in pain) as this is what my DR wanted me to do. Well, I went to see my DR this past week and he said there is nothing, but suspects I have adenomyosis, because all my symptoms are there. I had the ablation so I didn't need a hysterectomy, and now it seems I need it. I don't want to live like this, but scared to death!!

Why am I scared? I guess all the horror stories. And problem is, the recovery seems soooo long. I have one ovary left and do plan on keeping it. My cervix I have no clue. I also chose to have it after the holidays.

Does adenomyosis get worse as time goes by?? Or will it get better in time? Can an ablation cause it? It did stop my bleeding, but that is about all.

I am scared and don't really want this! Help!

Confused and scared ,
Liz

Liz,

You have my sympathy! You've gone through a lot and should feel better now, but you're feeling much worse. That's especially unfair.

I suggest you search this site for adenomyosis info and links. There is a statistical connection between any uterine procedure and adenomyosis, but I think the actual causes are not known.

If you do have adenomyosis, it won't get better before menopause, and maybe not even then. Anyway, that's a long time away for you.

Everyone is different as far as recovery from a hyst - it depends on your condition and problems before surgery, the type of surgery, your surgeon, and lots of other things. Anyway, I had outpatient LSH and recovered within a few weeks.

Best of luck to you,

Evelyn

Hi Liz and welcome to Hystersisters

I know how scary it can be when you first hear that you might need a hysterectomy! It's pretty hard to take it all in at first, especially if you've already decided to try another treatment (like ablation) in order to avoid having a hyst.

I'm very sorry to hear that you are having this terrible pain around the time of your period. Adenomyosis can cause some pretty awful pain, not to mention severe bleeding. It's very tricky to diagnose, but since your doctor ordered the MRI there's a good chance the diagnosis is accurate. A lot of gals don't even know they have it until the pathology report comes back after their hysts (I was in this category myself). Some gyn don't order the MRI because it is a pretty expensive test and often there are other conditions present, like fibroids, that are more easily diagnosed and potentially the cause of similar problems.

The only "cure" for adeno is a hyst, unfortunately. That's not to say that you can't live with adeno, but quality of life counts for a lot in my book and having to deal with such severe pain may be more than you can take on a recurring basis.

I'm providing a link to the Resources area of Hystersisters, specifically to links for information about adeno. I hope this will be helpful.

Links for Adenomyosis Information

Please keep us posted on how you are doing and what you decide about treatment. I know this is not easy, but we're here for you and we'll do our best to provide support. Sending gentle hugs your way.

Beth

Hi Beth,

Thank you so much for your support, as it means alot. I hope I didn't confuse you. I went for the MRI, and my dr wanted to go over the results with me. He said the MRI showed nothing, but he suspected adenomyosis because of my symptoms, and said that sometimes it can go undetected even with an MRI. Mind you, I had a contrasted MRI and non-contrasted as well. I was in pain at the time I went for it.

So do you think it can be undiagnosed through an MRI?

Liz

Liz,
I really feel for you as you make some hard choices. I will keep you in my thoughts. All the best to you,
Nadine

Hi Liz,

If you read the information provided in the link from my previous post, you'll see a long quote that talks about diagnosing adeno from an MRI. Here is what I think - and this is just my opinion - they can't give a definitive diagnosis of adeno until they actually examine the uterus in pathology. Even taking small samples of the uterus (biopsies) they can miss areas that have adeno - and still end up with a wrong diagnosis. Same holds for MRI - what may look like adeno could be fibroids and vice versa.

You are in a tough situation, like so many of the ladies here. You have pain but the docs really can't say for sure what is causing the pain. Your symptoms sound like adeno and it can't be ruled out - but there's no guarantee that you have it either.

I highly recommend that you get copies of all your test results and take them to another gyn for a second opinion. You sure don't want to have a hyst, only to find out that the pain is still there! mg: If two gyns are able to tell you that they are pretty confident you have adeno ... then maybe a hyst is the right course for relief. But you need to feel like this is the right thing for YOU, and right now it sounds like you don't. That's a very good reason to do some more investigating ...

Earlier you asked if adeno can improve or worsen over time. I don't believe it can improve, although after menopause when your periods stop I would think the pain would be less. This is something to confirm with your doctor. As for adeno getting worse - yes, I think it is progressive, particularly since you are young and not approaching menopause.

Keep reading and asking questions. Please don't consent to a hyst until you are confident that this is the right treatment for YOU. It is your body, you will have to live with the consequences (good or bad), and even though you are in pain, you have time to investigate your options. Keep us posted on what you find out and how you are doing. Sending extra hugs your way.

Beth

Hi Beth,

When I had my edometrial ablation that was pretty much my last option. I tried to avoid the hysterectomy in any way possible. The ablation had corrected the dysfunctional uterine bleeding, but the pain has gotten worse since the ablation. My bleeding pattern was very difficult to live with as some months I was bleeding for 3 weeks straight. I was diagnosed with endo when I was 28 when they removed a dermoid cyst from my left ovary. I have always had heavy and painful periods, but more so after my tubal in 96. Everything started to go downhill from there. I have had several laps done on me for pain as well as D and C's. They tried to help the bleeding by putting me on progestin which made my bleeding worse. My left ovary lept growing cysts on it and was presenting a problem, so he took the left ovary and the tube, which was twisted around my bowel with adhesions.

My OBGYN also found through an ultrasound that my uterine lining was very thick. He thought that was maybe the problem why I was bleeding so much, so another D & C was performed and he scraped the lining. It helped for awhile, but the bleeding came back as well as the pain. Of course, he suggested a hysterectomy last year, but than we decided to go with the ablation instead. Kind of like the last and final option.

The pain I am having since the ablation is nothing that I have had before. Much different. It feels like contractions and they are constant and intense which led me to the ER this past July.

I tend to wonder if I had adenomyosis all this time, but was never diagnosed. Who knows. My DR is at a point where he doesn't know what to do anymore, but a hysterectomy, as we have tried everything so far. He told me out of all the ablations he has done, there was one woman who had the same exact symptoms as me, and she wanted a hysterectomy. After he performed it her pain disappeared. It was than discovered after the surgery she had adenomyosis.

So this is bascially where I am at. I feel torn because there is no proof, but than again, the article I read which you had posted made alot of sense, and sounds just like me. I guess I could go for a second opinion, as that won't hurt. I just want to know before I make the big leap. I really want this to all disappear.

Thank you Beth for listening to me go on and on....I really need to talk about it and try to put the pieces of my health together.

Liz

Hi Liz,

I hear you. It does sound like you've tried just about all the options available to you. I was on progestin for awhile too to stop my periods and it did do that, but I felt awful - like having a permanent case of PMS with bloating, pain, terrible moods, you name it.

It sounds like you've been through a lot already with your gyn and that you trust him/her - that is good. But a second opinion is always a good idea when you're contemplating major surgery. Especially since you want to be as confident as possible that a hyst will end this terrible pain you are having. Even if a second doc can't say definitively that a hyst will take care of the pain, I think you might feel better about this decision if another doc confirms the probable diagnosis (adeno) and confirms the recommendation of a hyst.

I know how hard it is to come to terms with this decision. And only YOU can decide what is right for you. Please keep reading, keep asking questions, and we'll be here for you. Whatever you decide, we'll do our best to support you. No apologies needed for long posts and lots of questions. So many of us have walked in your shoes - we empathize with you, believe me.

Thinking of you and sending positive energy your way.

Beth