Anyone with adenomyosis, please help!

I thought I wasn't having all that bad of things, until my hubby AND my mom pushed me to find out. I think as women we sometimes just live with things until we don't even realize how many things we have wrong or how often we have pains, etc.

Thanks Lisa,

Now that I have talked to some of the "hyster-sisters" here I know that it will probably get worse with time. If I have to go through another 2 months like I did this past summer of constant bleeding, which I am sure led to me being anemic (I was tired allllll the time) I don't want to risk it again. The date I have scheduled is the best time for me now or I will have to wait until next summer.

I have never had fibroids, but I did have a polyp that was removed during the same time my dr. did the ablation. The polyp had been causing my heavy bleeding for 8 years.

I think I am finally ready now to face it all.

Hi chocolatepiano,

That's the most important thing, being able to accept your decision as the right one for you. In the past week, I've come to that realization as well. I've spent time on other websites for fibroids but I've never gotten the support there that I've gotten here. Hystersisters gives people stength, no matter what their decision. Your treatment is such a personal decision but it's so comforting to know everyone here has walked the same path at one point or another.

Take care and best of luck!

Ok, this feels so strange for me, you totally described a lot of things I didn't know were part of this! They found my adenomyosis on my pelvic exam. I've had a lot of pain and problems, now knowing to be caused by this, according to my doctor's theory. My doctor had no doubts on it being adenomyosis. She didn't use words such as advanced or extreme though.

I've also got this strange thing. If I bend wrong, my legs feel almost numb for a second and I get a shooting pain but can't explain where the pain travels.

My symptons are not constant either. Matter of fact, when I finally decided to go to the doctor a few weeks back, I started right before hand and didn't have the pain or being sent to bed for two days from pain and exhaustion even!!

I was also told it would only get worse without my hyst. They're taking my cervix as well because yearly exams bring me to tears if they touch it.[/quote]

Sorry all - hit the wrong button. Strange odd numbness and shooting pain, inconstant symptoms, painful sex (but not every position,) etc - all part of my experience too. Something very strange - I got to the point about 3 months pre-surgery where my period was light but continuing for 3 out of 4 weeks. But then a month before - no period for several weeks and then heavy only a week before. I have to say though, Doc was spot on. All of this went with the surgery. I can't believe how much my life has changed since the surgery. I really didn't realise just how sick I was getting as the deterioration was so gradual. All the best ladies.

Hi Ladies, I haven't posted in a long time. I found that I was "tunnel visioned" on my multiple problems and needed to seperate myself for a while. Anyway, I wanted to share my story with you as well.

Almost 3 years ago, I started complaining of awful pain and heavy bleeding during my period. Things got really bad. By the middle of last year I started having severe pelvic pain a few days before my period and could hardly get out of bed or walk for the first few days after I started. My periods were always 4-5 days and not heavy for more than 2-3 days. By November the pelvic, back and leg pain was unbearable and I spent half the month in extreme pain. I went off work and was scheduled for an exploratory laprascopy in January. By the end of the year I only had about 4 days a month when I wasn't curled up in a ball on the couch with heating pads, bags, pain killers and bawling my eyes out. I was taken to emergency twice and treated with demerol.

When I finally had the lap done, they found absolutely nothing. My uterus was normal in size, there was no adhesions, scar tissue or endo. My Dr sent me to a specialist. My appointment was not until May 2008 and in February my disability insurance decided that I couldn't prove there was anything wrong with me so they were sending me back to work. I called the specialist bawling and hysterical because of the pain I was in and the thought of having to return to work. He reviewed my file and called me back. He asked me to start birth control.....(my thoughts, are you freakin kidding me? My tubes are tied and I taking Oxycocet, anti-inflammatories and muscle relaxers.....what the h@ll is birth control going to do?) and take it continuously until my appointment.

Within 4 weeks the pelvic pain was completely gone!! However, when I had break-through bleeding the pain came back with a vengence. Finally, I got to see him and when he did the internal exam, I was tender. Then he touched something that caused such severe pain that I almost flew off the table and made that noise when your sucking air in..... he said "oh...that was your uterus I touched". Immediately he determined that I most likely have adenomyosis.... I was shocked because I had read all about it and I didn't even believe that I fit the diagnosis.

Anyway, he asked me to remain on the BC for a couple more months and he would reevaluate me. When I seen him again he determined that it was most likely adenomyosis and recommended a hysterectomy.

The only symptoms I had were pelvic pain, pain during sex and an exquisitely tender uterus (that was normal in size, shape and appearence). The reason I explained all of this is because it started almost three years ago with "bad" periods and within two years I couldn't walk, eat, sleep, take care of my kids....nothing the pain has been horrendous. The birth control, thankfully, worked for me, but I have only been on it for 8 months and have had break-through bleeding at least 4 times. To get it under control I have to go off the pill and those few days are just horrific.

I know there is a "chance" that it may not be adenomyosis as it cannot be truly diagnosed until after the hysterectomy and a biopsy is done, however it is a chance I'm willing to take. I pray that the surgery will help and I will find some relief.

I don't know if this has helped you at all, the best advice I can give you is to really research your options and consider what you feel the benefit may be to you.

Strangely, I'm excited and scared my surgery is October 16th and the idea that I may have some relief (I also have fibromyalgia and a back problem that is currently under investigation and I'm going for back injections on October 7th) from pain and th prospect of being able to make love with my husband without crying, or biting a pillow or cringing in pain or not being able at all reassures me that this, for me, a chance worth taking.

Good luck to you and I hope I may have helped.

Lori

I think all the sisters have given good input.

I only want to throw in that you might want to inquire about the Mirena IUD, it delivers progesterone directly to the uterus and for many women, there is a complete cessation of their periods. I very nearly tried it except I needed surgery anyway for my bladder stuff.

Chocolatepiano and others,
There are no easy answers. Years ago my ob/gyn diagnosed me with adenomyosis, to the best of his ability, explaining it is hard to determine. He removed some ovarian cysts and said the adenomyosis appeared to be all over the uterus and the only solution would be to remove the uterus. I had terrible pain off and on, periods that were totally erratic, often very heavy, causing me to spend several hours sweating, shivering and vomiting, unable to get up off the floor (or bed if I was lucky enough to be home when it started). School nurses used to insist it couldn't be related to my period, and that I was very sick. Anyway, I was in my early thirties and not sure I wanted to rush into a hyst. This summer, finally unable to stand the severe prolapses that developed, I had a hyst/bladder repair, rectocele repair, and they put in a sling for the bladder. I have had problems ever since with pain, urination, and I suspect a prolapse again. My surgery was July 15, 2008.
I suggest you continue to research and think it over. Results are not guaranteed, and sometimes complications arise. I'm sorry, but my experience was not all good. I have been back to the doctors several times, one said I need surgery again to fix adhesions, and I'm seeing one of the surgeons tomorrow (there were two surgeons on my initial procedures).

Hi Chocolatepiano

Your thread caught my eye because there's not much known about adenomyosis so I wanted to share a little. That was my issue.

I had a little endometreosis in my early twenties and they operated (laposcopy) and were able to remove it all before it grew. But I always still had troubles. No one knew why and for the most part I just grew to live with it. (very sparatic periods, lots of pain, no real cycle but being on the pill most of my life kept me "regular") I'll be 40 this year (birth control free for 5 years) and the last two years have been brutal. My docs assured me there is no more endometreosis so it must just be my body. In the last two years my periods raged. Heavy to the point of at least 20 pads soaked a day, huge scary clots and pain that doubled me over. For the last two years I've been getting my period every two weeks and I had to go on iron because I was becoming anemic. Finally my doc scheduled me for another ultrasound spring 2007 and I lucked out. I hadn't drank enough water to fill my bladder and because the technician was in a hurry, she asked if I'd mind if she did an internal ultrasound instead. I said sure. I'm SO glad because that is how the caught the adenomyosis. A "wand" was inserted in my vagina to do the ultra sound and the bladder has to be empty actually so the process was actually quite better than a normal ultrasound. My gynie got the results and showed me the adenomyosis. It was clearly visible in the pictures and she explained that that's about the only way they can see adeno for sure. The walls of my uterus were full of it. It was explained to me that adeno is endometreosis but contained within the walls of the uterus and 3/4 of my uterine walls were full.

I was so thankful for that day and having to have had the internal ultrasound.

Now from there it was recommended I have the ablation so I did in June 07. I wasn't ready mentally yet for a hysterectomy and the ablation would not stop the pain at all (because adeno is within the uterine walls) but is "should" help with the bleeding and hopefully eliminate it. First month was wonderful. But that was it. After that I was right back to where I started and the ablation was not a sucess...for me (it CAN be for many many women). Finally a year later I got so sick of the pain, blood and constant affect in my life we scheduled my subtotal abdominal hysterectomy. I'm on day 9 now post op and feeling pretty wonderful actually. I kind of wish I'd of done it sooner but I had to be mentally ready (no kids).

Everyone's different. What did or didn't work for me may or may not work for you or anyone else but I was told that the adenomyosis would get worse...and it did. I had 6 periods in July and August and couldn't wait for my surgery date. I still have my tubes, ovaries and cervix by choice. Only my troublesome uterus was removed and I'm very happy. Sure there's pain and discomfort and will be for more weeks yet but all and all I feel better this last week than I had been all summer. I can not wait to be fully "recovered" and thinking ahead to the reality that I'll never bleed or have such intense pain again....wow, I can't quite comprehend it yet but I'm really looking forward to it all. I wish they'd of done it all sooner but it was sheerly by accident they caught it, but I'm so thankful.

I'm not saying go get an internal ultrasound. I don't know what your doctor will say (or anyone else's reading this) but I can say....I HAD adenomyosis for years and years but no one knew and that's the one procedure that clearly showed them what was going on inside of me.

I should also say that I take care of myself. I didn't for many many many years but the last 3 years I've really put effort into diet and excercise, doing everything I could to help myself. No doctor could help me so I took it upon myself to get my life in order and I think that's helped and will help with my recovery. It's too soon to tell if there will be any complications with my hysterectomy but I'm pretty confident because I will follow all the "do not do" rules, I will continue to eat good and I will continue to think postive, and I'm fairly young...I shouldn't have any issues with bladder, bowels, etc.

I wish you all the very very best in your journey. For me...6 weeks of pain (which isn't too bad actually), discomfort and inconvenience is a drop in the bucket to what I'd been living with all these years.

Adenomyosis IS hard, almost impossible to detect...but they can. I just don't think it's that widely known yet. I'm just a lay person and knew very little about my woman organs but even I could see the adeno clear as day on the pictures my gynie shared with me.

Sorry so long....lol....days after surgery are really really long and boring.

Very best to you !!!

You know, I actually saw my adenomyosis during my pelvic ultrasound, I even asked what it was. She quickly moved to wand down and told me it was blood flow (when she answered me, it probably was but I know she moved it before answering also). When my doctor got out pictures to show me, I thought to myself, that's exactly what I just saw during my ultrasound!