24 and Scared..... Adenomyosis

Hi everyone,

I am brand new here and I am looking for some opinions. I am so sorry if this goes on longer than it should, but I figure all the details are better than having everyone guess

I got my first period when I was 11. Every month it was severe pain. My family thought I was a sissy and my Dr thought it was all in my head.

I did blood tests and ultrasounds almost every month since I turned 18. The pain was just too much. All my pap smears would come back as abnormal. I found that the only two things I could do is to either take so much medication that I would pass out, or spend three days sleeping on the bathroom floor and puking my guts out from the pain.

I finally had enough and forced my dr to give me a referral to a Gyn when I was 21. The first time he saw me, he was shocked that I hadn't been treated by a Gyn before. I was in for a Laproscopy within 2 weeks.

He checked everything out and determined I had a type of Endo called "Deep Nodular Endometriosis." Fine. No problem. We decided that I should go on Birth Control continuously. (I am on Marvelon currently). Since I take it continuously, the pain is somewhat controlled.

The pain steadily got worse and I went back and asked what else we could do. I would bleed when I would lift a box, I would bleed if i was stressed, i would bleed if i got angry etc.

So he suggested we try something a little different.

We did a D & C and then he injected my uterus etc with botox.

IT WAS AWESOME!!!!

I would strongly recommend this to ANYONE that has endo pain. It solved the pain for about 9.5 months. Oh gosh, It was so awesome!! I can't stress that enough.

Well, in Dec all the pain came back (botox wore off) and i started bleeding again, but it wasnt blood, it was this black tar stuff.

So I went back and he suggested an MRI. Ok..... sure. I did the MRI and he has now come back saying that I have severe Adenomyosis.

Adenomyosis was not something that he thought I would have. I'm 24, no kids, no pregnancies etc. So it was SUPER odd.

Now I have a decision to make and I don't know what to do. I can't sleep, I can't eat, I cry all the time because I don't know which option to take.

He has given me three choices for treatment.

1. Continue to take my Marvelon and pain killers and just deal with it

2. Have an IUD implanted (Mirena). My problem with this is that because I have Deep Nodular Endometriosis, the bleeding every month (until it stops) will kill me. The pain is severe.

3. Hysterectomy.

I don't know what to do. I do not want kids. But realistically I am 24. That could change in 5 years.

I am so sorry this is so long, but I don't know what to do. Please help.

I wish I had a answer Hopefully someone that can relate will reply.

The pain for me was unbearable. I do have children and I am 47 now. This was not a hard decision for me. I can relate to the deep nodules, I became addicted to pain killers. I had to up the meds and became a different person.

I had the ablation and it helped for a short time. Keep in mind everyone is different and results vary.

Hopefully someone will respond to your post, I'll be thinking of you

Hi danniek! I've suffered from adenomyosis since my c-section last july. The pain has been debilitating, I'm addicted to painkillers, & I can barely take care of my kids. I tried an IUD but it made the pain worse, and gave me an abcess on my uterus. I'm having laprospcopic surgery this week with my gyn & a urologist to assess the damage, then my hyst a week or 2 after that. They think my bladder has adhesions. I was trying to hold out with painkillers until I graduated from college (I'm 27), & my DH & I decided if we wanted one more baby. But my quality of LIFE has declined so badly that I don't have a choice.

My DH & I decided that if we want another child, we are ok with adopting. I know that carrying & birthing is an experience like no other, but I also imagine that giving a child a wonderful life full of love that they may not otherwise have had, is also a complete experience like no other as well.

Only you can make the decision, but you have to consider your quality of life. I was a happy loving mother before all this. Now I'm moody, depressed, run down, & struggling with life in general. When I was explaining my surgery to my 5 year old, I told her that our life would be different when I was healed. She said "So you will be fun again?" Right then I knew I made the right choice!

Good luck with everything. I hope your pain stays under control! Feel free to PM me if you ever need anything!

~Shanon

Thanks guys....

If you were in my shoes, what would you choose?

I'm not your age, but I feel scared too. I'm trying to decide whether or not to have a hysterectomy so my thoughts are with you. Sounds like you have been struggling a long time. Check out all your options and decide what is best for you. I decided not to do hormone therapy as I read many of the results did not last long...I wish you the best in your decision...

Hi There!
I had a TAH on 4/15---diagnosis adenomyosis/fibroids. I am 36 years old and have no children.

My pain was so severe, I didn't want to eat and couldn't sleep because of the pain. The doctor gave me darvocet as needed and it didn't touch me.
I told him I wouldn't try anything else because I didn't want to have to depend on pain meds to get me through every day. My pain was never ever gone....on some days it was just mild, but was still there.

Pain can make you so sick, and it is debilitating.
You are young and have a lot to consider. You need to talk to your physician and than you need to take all the info you gather from him and your research to make the right decision.

The only pain I've had is recovery pain. I have no more back or leg pain.
And I suffered with that every day. Was terrible.
Now it is completely gone...after 5 years of going through the severe pain and most of my teen years with moderate pain. (I had my period at 9 years old....)

Take care and keep us up to date. You will be in my thoughts.
We are here for you. And you will probably find a lot of info on this site you never considered.

By the way, my doctor told me he woudn't know if it was adenomyosis until AFTER the surgery. they biopsy the uterus and send a pathology report.
Sometimes it is detected by MRI, but he never sent me in for MRI.
All doctors are different and you need to really ask a lot of detailed questions. I hope you get the answers you are looking for.

Good luck

Good luck to you Smendes! Ihope you get better soon!!
Keep i n touch with us!!!

Hi,

I just wanted to give you some (((hugs))) and let you know you are not alone. I'm 25 and have issues with endo since I was 11 (I actually passed out at school from the pain!! 3 times in 7th grade!!). I've run the whole list of treatments. And my doc has recommended the hyst. I totally thought I was ready for it (divorced, & no kids, but I've always planned to adopt), but it didn't happen since I had just been laid off. And then 2 weeks ago something happened and the idea of sugery is off! And I'm the last person on earth I would have expected to feel this way! My doc recommened seeing a phsycologist to make sure you're totally ready for everything. I'd really think it's a great idea.

Good luck, I'll pray that you are able to come to the best choice for you!

~krissy

I dont knwo what is best for you but i was 28 when i had my hysterectomy for adenomyosis i tried everything befor and nothing worked i cried and cried cause i so wanted a big family but now that i had they hyst i feel so much beter i have a life again and no pills woohoo. lots of luck
hugs
lisa

Hope you are feeling better today.