Adeno with pain only

Does anyone else out there have adeno with pain as the main symptom? My doc diagnosed me with adeno two years ago after an MRI. He told me that menopause usually resolves the adeno. My pain has progressed over the last two years to now when I have so many days that I feel horrible. I could not cope with the pain if I did not have hydrocodone. And some days I can not function at all. I literally roll up in a ball for hours. I'm 49, hoping to out last this, but I am worn down. I keep wondering if adeno is my problem..because I do not have any heavy bleeding. I go to my doc tomorrow to discuss options. I'm so frightened of a hysterectomy, but I want to stop hurting. How would I know if a hyst. will stop the pain. Any advice is appreciated. I'm so discouraged.

I'm new to the boards, but I've got adeno as well and this is my experience:

Before I had children, I had all the classic symptoms: intense cramping with severe pain, heavy bleeding with clots, etc. Then when I got married we found I also had extremely painful intercourse as well. I was told to have the family I wanted and then get a hyst because that was the only thing that would stop the pain (I was on several different pain meds to try and cope, and I had to take them nearly every day). I had my first child and the pain continued afterwards, only worse. I then had my second child and opted for the Mirena IUD. It has worked miracles as far as my cycle goes - I now have a "normal" period that lasts 3-5 days with average cramps; without the intense pain and heavy bleeding, etc. I thought maybe I was "fixed", but the painful intercourse is still very much a problem. I saw my Dr. last in May and we talked again and did another check and he said my uturus stills looks and feels the same and he still suspects adeno (there's no way to be sure until AFTER a hyst if it's actually adeno).

Your pain sounds very much like mine used to be. I would miss school and work for days, curled up on my bed moaning and crying and sometimes throwing up because the pain was so bad. Then it would "dull" (it never really went away) for a week or two and then start all over again. If it was still like that for me, I would definitely be scheduling myself a hyst because a life lived in pain is no life at all. Since my pain has changed I am having second thoughts about a hyst, but it sounds like you might have a longer road before you, especially if the pain has been progressing the last couple years.

From what I have heard and read a hyst WILL stop the pain IF it's adeno, because adeno is a disease of the uterus, so if the uterus is gone the pain would also be gone. However, if you have cysts or endo on your ovaries or other organs it might only solve part of the problem. Was anything else discovered or suspected after the MRI? I would consult with your Dr. again and maybe get another opinion to see if there might be any other problems or conditions causing your pain before deciding what to do.

Good luck and keep us posted - we know how you feel!

I just had a lavh on September 8th.

I had very quick periods with only the first day being heavy. However, I have had daily pain, worse in the morning, for almost two years.

Everywhere it describes Adenomyosis as painful periods with lots of bleeding etc. That does not fit me at all. My path report confirmed the Adenomyosis and Fibroids.

I read a few posts here with women exactly in my shoes, only having the pain part and not the classic symptoms at all. That gave me comfort in making the decision, and although I am very early out of it I am very happy as now I am free of the daily pain!

Hello Rory68

Thank you for sharing your experience with adeno. Yes, your symptoms sound so much like mine. I went to my doc today to have more conversation about my situation and the possibility of a hysterectomy. My doc says it comes down to my own decision and how much pain I can stand. I really don't want a hyst. and I think on good days that I can beat this! But on the bad days, I'm ready to go for the hyst. right then. Was it the frequency of pain that helped you decide? What did help you make the decision. Did you have any other tests besides an MRI to confirm the Adeno? Are you glad you had the hyst. and are you now pain free? Sorry for all the questions, but I have such a fear of going through the surgery and then still hurting.
I hope you have a very quick recovery and will enjoy the best health ever! Thank you for being a hyster sister to me.

Thanks for your well wishes! It's going well.

The decision for me was easy as I was just fed up with the pain. I've had it almost 2 yrs before the lavh. Initially I was sure it was colon related and spent a year doing GI tests. With my GI dr he ordered an u/s and a CAT scan. Based on these tests he said, while investigating the GI route, I should go back to my GYN to have a suspicious polyp removed which was at the opening of my uterus.

So, in May I had a hysterscope to get the polyp out and tested. Also at that time he did a d and c and something else I can't remember. Based on that hysterscope my dr felt confident that I had adenomyosis. But I'm sure you have read that you can never really be sure of this until you have the hysterectomy. So, I trusted my dr.

But I was curious as I didn't have the classic symptom of heavy bleeding at all. That's when I came here and found that there were some other women who were like me and low and behold it was adenomyosis.

My dr said that the surgery for me was a question of the quality of life I wanted. The pain was daily, and I am not exagerating at all. Every morning it would wake me up. I was so sure I had cancer of some sort. But I know now I am rid of the problem.

Also, this wasn't out of the blue for me. While conceiving our first child I developed 5 lbs of fibroids that killed our first child. My dr cleaned up my uterus and fortunately we were able to have a child. My uterus has always been a problem, except for those 38 weeks. So, it wasn't much of a leap to assume it was the trouble.

I can't tell you how much relief I had a few mornings after my surgery and I knew my pain meds had worn off and I woke up with no pain. Amazing.

Feel free to ask more ?s, it's your decision but absolutely you can have adenomyosis and have easy periods.

Good luck!

Thank you for all the info you have shared with me. It really helps to talk to someone else that knows what the adeno pain is like. My struggle is making the right decision about a hyst. I have never had any real problems with my periods, always very regular and not much pain. About 2 years ago I started having episodes of severe pain in my lower abdomen. I never thought it was female related since I had never had problems. I kept going to my doc insisting that I must have a bladder infection. One Saturday morning I woke up in such severe pain I just knew something had to be bad wrong with me. My husband drove me to the ER, they did an exam, ultrasound, and said they didn't know what was wrong. Sent me home with pain meds and told me to follow up with my doc. It was then that I decided to see my GYN. He did an exam and said he was highly suspicious of adeno. He wanted me to have an MRI which I did and he said it confirmed it. I had never heard of adeno before and my regular doc still doesn't act like he knows what I'm talking about when I mention it.
I know they can not be 100% sure until after a hyst. but do you think any other tests would be needed before deciding to go ahead with a hyst. My doc said he had no problem having another MRI done, but that it would be mostly for my own peace of mind. He did not think he would find anything new since 2 years ago. I told him my biggest fear is having a hyst. and then still hurting because something else was actually causing the pain. What kinds of tests did you have before the surgery? I think I could make my decision easier if I had heavy bleeding, but pain only makes me think I am wimping out if I can't deal with it anymore and want the hyst. I keep hoping I'm close enough to menopause that it will stop, but he says there is no way to be sure. I too sometimes wonder if the pain is caused by something else like cancer. Shouldn't he do some more testing before he operates on me! Thank you for your info. You are very kind to share. I'm so glad to hear you are feeling well now!

I am having my hysterectomy because my family doc and my gyno suspect Adeno. My GP said that last year when I first went to see her about my pain. Growing up I always had bad periods but just thought that it was normal, but ever since having my 4 boys it was getting worst. I just chaulked it up to be having them so close and I was always told that I had a bigger than normal utures and after every delivery I ended up with an infection. Well last year the pain was getting to be an every day thing and the first 2 days of my period were horrible with heavy bleeding. As soon as my doc ruled out everything else she told me she figured it was Adeno but sent me to a male gyno for follow upa nd he was to do my tubal and have a look. Well he tied my tubes and told me that I "was just having bad periods and to live it out" My gp wouldn't stand for it and sent me to one of the best female gyno's in the city(took me 6 months to see her)As soon as she heard my symptoms and did my exam she said it...Adeno.....She told me that as I got older that it would get worse, now I am only 29 years old so it was either to put me on the pill(that didn't work anyway) or have the surgery, I will be getting the surgery. Th epain is so intense sometimes that I can't stand on my legs for fear of falling down, I can't live like that. My labor was not that bad. And as for intercourse, it's not so bad during but for days later I am buckled over in pain. I would go with whatever is best for you, I can't wait to have my surgery I just wish that I would get my call, I am so ready to start enjoying my life. I wish you all well and pain free days.

Well, I wasn't offered an MRI, but I think I remember reading that it can diagnose Adenomyosis, so if that is correct then I'd have the surgery. I would think having another MRI would just show it has become more intense. But maybe someone with MRI experience can comment on that part.

My pain was in the morning everyday, it would ease with walking around. I had other symptoms that I could live with during the day it was just that terrible pain(lower right) in the morning that scared me.

I think what has you worried is simply the fact that all the medical literature states you have to have terrible periods to have Adenomyoisis. Use the search feature here and you will find more people in our boat. You have to be at peace with this though so don't rush into anything, just keep reading and do what is best for you. It's terrible to have pain but you don't want to regret rushing into anything either. Hopefully someone will know if an MRI is definitive.

Newfie Lady-- Can you get on a cancellation list? I hope you get a date that is soon!

I was just diagnosed with adeno via MRI. I was being evaluated for a uterine artery embolization to treat fibroids. I do have horrendous bleeding/clotting with my periods. I also have pain but I always thought it was from my endo.

Anyway, my ultrasounds always showed fibroids. It wasn't until I had the MRI that anyone indicated I had adeno. The doctor showed me the MRI and pointed out both the fibroid and the adeno. They definitely look different.

From what I've read about MRIs is that if the adenomyosis is extensive enough, then it can be visualized. If the adeno area is too small, it may not be detected. My adeno was larger than my fibroid so they had no trouble seeing it on the MRI.

Newfie Lady-- Can you get on a cancellation list? I hope you get a date that is soon![/quote]




Ha I wish I joined here in April just a few days after my first appointment with the new gyno, I was told that it would be 6 months tops. About 3 months in I was bleeding for almost a full month while taking the pill so I called my doc, the sect. told me come in right away, seen the doc and she same the same thing again, that I was on the list. So not too long ago I called again to see if I can get any est. on a date so I can get child care and my dh's holidays organized and she tells me it will be mid to late November for sure :burning: There are 7 other women ahead of me. And I can get another referral but that will take months. I just don't understand why they can't give me a date, I mean her appointment book is just right there, makes no sense