Adenomyosis and so confused

I am so glad I found this site. It gave me such relief. I am 27 years old and just had a laprascopy done for suspected endometriosis. Turns out I have Adenomyosis which I had never heard of.

I have had such awful periods since I started at 13. Started when I was 18 I have had clots with them and most recently feel like I need to push these clots out. The past year I have had contractions and feelings of pressure like I was in labor. IT has hurt to have sex since I can remember, which is starting to take its toll on my marriage. And I am in so much pain now I am on Hydrocodone til my doctor appointment on July 6.

I am so confused my doctor wants to insert an IUD, or put me on a pill to stop my periods. He says this will help the pain. But when I had my iud, it still hurt to have sex, urinate, and have bowel movements. After soooooooooooo much research I dont think these things help and my doctor is reluctant to do a hysterectomy when Im only 27. I have a beautiful son and daughter and we had preterm with both and were not planning on anymore.

I would just love advice ffrom people who have egone thru this. Do IUD and bc work. I dont wanna take painkillers for the rest of my life I just dont see those things taking all the pain away. And i wanna be happy and normal again. Til this site I thought I was going crazy!

Any advice would be greatly appreciated

Sincerely
Mandi

I am 31 with adneomyosis and endo and am scheduled for a hysterectomy next month. I had a IUD put in 4 years ago and that's when I really started having problems. My uterus became infected and I felt bad! After lots of thinking and doctor visits I found out that a hysterectomy is the only thing that will take away the pain and long periods. I am also scared that I might still be sick but I am trying to not think about that. Good luck with your decision!

I have had painful heavy period since age 13. That is also when I stated passing clots. At 17 I was on BC pills due to anemia. My Dr wanted me to start them at 13 but mom said no way and they just dosed me up with plenty of iron.

After my 2nd child was born and periods started again they were horrendous...clots bigger than post childbirth ( big enough to fill your palm), and pain in my cervix that felt like labor... sounds just like you! I was 28 at the time... well after 5 years of trying different BC pills, the Mirena iud ( I still bled and cramped every day for 4 mos) a D&C for polyp removal.... several ultrasounds were indicating adenomyosis. No fibroids, just a heterogenous texture & enlarged uterus. After the polyp removal my Dr was sure I would be fine and could stop the BC pills which weren't totaly effective.

So I put up with the heavy bleeding for another year and went back. My next sono showed my uterus was even bigger ( 12 week pregnancy size) , yet he was still reluctant to do a hysterectomy. My DH already had a vasectomy 4 yrs ago! He wanted me to try an ablation, but told me for my insurance to cover any procedure, that i would need to try at least 3 mos of Prometrium. So even with the Prometrium, I was bleeding through a super tampon and pad in less than an hour for about 6-7 days. I was waking up every hour 1-2 hrs at night soaked trough everything. Went for my follwup for the new med to find out my Dr. was moving out of state. So, I got an appt. with one of his partners, ( 3 of my friends go the her and one just had her hyst. done in Feb. by her ) she was wonderful!

She reviewed all of my records and said hon, you're going to feel so much better if we just get your uterus out! She also said the ablation was not likely to help with the adenomyosis...it won't make your uterus smaller! Also since I am only 33, I still have too many hormones stimulating my lining... that she could guarantee I'd be back next year asking for a hysterectomy. So, as long as I had the 6 weeks to recover, why have an ablation that wouldn't be guaranteed to work and end up with yet another surgery. The interesting part is the next day when the surgery scheduler called, she told me that for my insurance they did not even need to get my surgery pre-authorized. LOVELY! So, my lesson in life... just because you are "too young" doesn't mean you should suffer.

I am 12 days post op and feeling pretty good. i haven't had a sinlge bit of low back pain since surgery. I used to have it 50% of the time...mid cycle and the week before and during my period. It always felt like someone was putting their whole body weight on their knee and grinding it into my lower back. I had also developed bladder problems one year ago. Recurrent UTI's and leakage when my bladder was full....it would just start to dribble to relieve the pressure. Haven't had that happen at all since surgery! I was having to wear a pantyliner all the time. Free at last! The 1st week wasn't a blast, but i am looking forward to the future! My DH is also looking forward to the uninterrupted availability!

I hope you find all the answers you are looking for...and wish you blessings on your journey!

I'm new here, just reading as much as I can. These sound just like my story. I am scheduled for a hysterectomy in August; however, I am having a really difficult time deciding whether to remove my cervix or not. I've received such conflicting advice. I know it is a personal decision, but I just don't know....
Thanks for sharing your stories. I'm looking forward to the pain relief once this is all over!

I have been looking at all the other posts on this site. I noticed no driving for two weeks post op. No housework or lifting for four to six weeks?

I have a 2 year old and a 5 year old. My symptoms just bagain to get really bad but I am soooooooooooo much pain I cant stand it. I am taking painkillers, but I hate them they make me different. Does anyone know do BC pills or IUDS work well for treating the pain and for having intercourse my husband and I havent for so long due to the pain it is taking its toll.

From what I have read maybe Im better off treating the pain until my kids are older, my husband can take off a week but what do I do after that? The pain and symptoms are just really getting to me. Im crabby at the people I love and have to plan my days around when my pain pills will be kicking in.

I wanna enjoy my children and husband not be in pain and crabby all the time. I talk to my dr next friday about options but after this site it seems everyone is soooooooooooo much happier after they got the hyserectomy. I was just wandering now what is recovery time like and is it very painful and how do you do it with two young children. Thanks for letting me vent and any advice would be so much appreciated I am so confused and torn and have no idea what I should do :confuse:

I have the same problems..plus some. I have always had heavy 7-8 day periods since the age of 13. After my daughter was born in 2000, I developed the low back pain, even heavier periods and in the last year and a half suffer migrains on a daily basis. My doc says the migrains are from the drop in Estrogen..so I have a migraine, bleed heavy for 3 days, stop completely, have migraine..spot for a week, stop, have migraine bleed heavy, stop..see the pattern here? The longest was 21 days. I also have adenomyosis. It is now the size of a 12 week fetus, my doc has never suggested an IUD or pills for the adenomyosis. I did try the BCP to regulate my periods, but if you can believe it, it increased the migraines so off of them I came. It worked for about 3 months , then started back up. My uterus tilts backwards, is wedged in there pretty tightly and is attatched to my colon ( questionable endo going on there) 4 cysts on my right ovary, 2 of them 3 cm in diameter and 2 cysts on my left ovary. to make matters worse..if it can get any worse, my uterus prolapsed( I can see it in the mirror) and is kinking my urethra which makes urinating a fun experience or should I say " attempting to urinate". I ran down the hall the other day to check on a patient and could actually feel my uterus bouncing around..I had to stop and laugh..it was that or cry. My MD said my only option is a hysterectomy. I could go on for the next 20-25 yrs with everything the way it is but I am miserable. Between the bleeding and the daily migraines, I have had days I would have welcomed someone to put me out of my misery. I agreed with the doctor. so I am waiting for my total hys to be scheduled. I asked him about leaving the cervix as I had heard it played a roll in orgasms and such, but he didn't like the idea of leaving it in especially with my history of HPV.
I talked to a girl today whose neice just had a vaginal hys last week ( performed by my doc) she was out of the hospital the next day, very little pain, and is feeling fairly well. She even made a trip to Walmart. I am worried she may be overdoing it, but it was good to hear she was feeling so well. Put alot of my fears to rest, although she may be an exeption to the rule.
Oh, and feeling crabby? I feel like I am in perpetual PMS. I am so cranky I don't see how anyone can stand me. I hate feeling that way, but I know its the hormones talking.
By the way, I am 38 yrs old

	Quote:
Originally Posted by dakconfused27 I have been looking at all the other posts on this site. I noticed no driving for two weeks post op. No housework or lifting for four to six weeks? I have a 2 year old and a 5 year old. My symptoms just bagain to get really bad but I am soooooooooooo much pain I cant stand it. I am taking painkillers, but I hate them they make me different. Does anyone know do BC pills or IUDS work well for treating the pain and for having intercourse my husband and I havent for so long due to the pain it is taking its toll. From what I have read maybe Im better off treating the pain until my kids are older, my husband can take off a week but what do I do after that? The pain and symptoms are just really getting to me. Im crabby at the people I love and have to plan my days around when my pain pills will be kicking in. I wanna enjoy my children and husband not be in pain and crabby all the time. I talk to my dr next friday about options but after this site it seems everyone is soooooooooooo much happier after they got the hyserectomy. I was just wandering now what is recovery time like and is it very painful and how do you do it with two young children. Thanks for letting me vent and any advice would be so much appreciated I am so confused and torn and have no idea what I should do :confuse:

I just wanted to note that I've tried every type of bc pill to alleviate symptoms...didn't help at all, actually made symptoms worse for me. Last Aug. I had a Mirena IUD placed, and the only thing it helped was to minimally lessen my clots, didn't do anything for the pain. Intercourse is still painful for me....awaiting surgery in Aug.
I hope you find relief in some sort of treatment.

Am I wrong to want the hysterectomy? I have been on bc pills and an IUD. Thre is just so much pain and this period is just all clots I have to push them out. I feel like I am pregnant there is so much pressure today and I'm so tired I cant stand it!. Part of me is afraid that he will take my uterus and say well you dont have adenomyosis after all and Im just crazy. Although I know Im not cause this pain is real. I am just tired of being crabby at my kids and my husband. And not being able to do things I love cause my pain pill might wear off and Ill be in to much pain.

Do doctors usually listen to their patients and do a hysterectomy if the patient decides before trying all the options? I just know from all my research that thre is stil pain even with the iud and bc pills. I know I am done having children, I just want to be happy and enjoy my life!

I was 28 when I had my hyst because of adno. The BC pills did not help me with the pain, the only thing that helped was the hyst. I was living a nightmare of pain and nonstop bleeding before that.

I can not imagine what my pain would have been like with an enlarged uterus and an IUD.

If you are conflicted then perhaps you should seek a second opinion.


The recovery period you mentioned is correct. I had an 18 month old when I had my surgery and I'm telling you that it can be done. It's a bit overwhelming in the pre-op stage but you can do it if that's the path you choose to take.

You are not wrong to want to get a hysterectomy. I had the same decision to make last week. I went for a follow up visit to actually decide whether or not I wanted to do the Novasure procedure (a type of endometrial ablation) along with a tubal because I would not be able to get pregnant anymore. I was ok with that but after all my research, I wasn't sure about the succes rate of the procedure...and I would still have back pain and cramping. After talking to my mom and aunts who have all had a hysterectomy and how much better they felt afterwards, I walked into my gyn office and asked what she thought about going straight for the big H. She understood my concern and could not guarantee the Novasure procedure would work so she agreed with me and said lets do it. You've been dealing with this too long. I was so relieved! Scared, but relieved that I had made the decision to do it. Don't be scared to talk you doctor about your concerns. If he doesn't understand or agree, definately get a 2nd opinion. Good luck to you.