Andenomyosis - Need advice from those who've been there

I am 38 years old and I was just diagnosed with adenomyosis yesterday. I have been having pain for a long time, but I contributed it to my history of dermoid tumors. 15 years ago I had a grapefruit size dermoid and part of my left ovary removed. Last year, I had a cantelope size dermoid and my entire right ovary removed. Fast forward to now. Different doctor now. Went in because my pelvic pain hasn't gone away, it has only gotten worse. I thought it was another cyst/dermoid. I have knifing pains, bloating, fullness, general cramping almost all the time, and a lot of times feeling like I have a baby's head pressing down on me. I spot between periods, especially the week prior, but I only have a couple days of heavy flow. The cramps are horrible and start a week before and last the whole period. Now, after an ultrasound, they found I have a slightly enlarged uterus and a texture consistent with adeno. My Dr did not make the diagnosis until I showed her the pictures of my uterus from my lap last year. As I described my symptoms, she said it sounded like textbook Adeno. She isn't pushing surgery, but said symptoms won't go away until after menopause. It's up to me how long I want to put up with the pain. I had a tubal ligation last year, so that's not an issue for me. I'm just don't want to have a surgery I don't need, but I don't want the pain anymore and I don't want it to get worse either. Any and all advice, personal stories, etc. welcome.

Your symtoms sound identical to mine and I have been diagnosed with Adenomyosis as well as prolapse rectum and bladder. I am 50 yrs old and will be having hysterectomy and repair in May and I wish it was sooner. I have been living with the pain for over a year and it is getting worse. Reading other women's stories on this site has helped me a great deal. I realize I am quite a bit older than you but the only cure is having a hysterectomy. At this point I just want my life back. I hope this helps and I wish you all the best.

Hi OSU

I just had my surgery for Adeno on feb13th. I had really bad back ache bloating bad cramps. Delt with it for years tried bc pills can't (tolerate hormones) didn't work to stop periods anyway so after 2 years and several dr later I found a drvthat suggested an MRI. It came back Adeno so this dr said hystrectomy or wait for menopause. I went for the surgery I was so tired of feeling so bad every month. I'm 9 days post op and I'm gald I had the surgery! It was a quality of life issue for me I'm to active to be bogged down every month being in pain. Living by my calendar was not fun now I won't have to worry about that any more . Good luck to you on what ever you decide

I am 34 and had a complete hysterectomy on Jan 20, 2012. I suffered for almost six years with Adnomyosis. I also have stage five endometriosis. I had the robotic surgery and although I am still recovering I feel a lot of.relief already from prior pain caused.by Adnomyosis. I fought it for so long. I put off hysterectomy because I felt like I was too young and was scared of a major surgery. I promise I get hours of complete.relief which. Proves to.me within time, I will no longer suffering soon. I say go for.it especially if.you have a.history.of.tumors. That is.of course just my opinion. I.do.want to also tell you I.was petrified of surgical menapause and hormone replacement therapy, but all of that anxiety was for nothing. It did.take patience.and.lots.of hot sweats, but I am almost five.weeks.post.op.and I.think we.finally.have my hormones replacement therapy.figured out. A hysterectomy is a hard surgery, but I am a wimp and if.I.could.do.it I promise you can to. So far I.don't.miss.my adno uterus at all. I am here of you have any questions!

Hello! I am 36 years old and I was diagnosed with Adeno a week ago. I have discussed total hysterectomy with my Dr and am waiting to be scheduled. I too have my fears but after finding this site and reading about others, I don't feel alone. Good luck in your decision.

HI I'm 38 and had tah and bso last Tuesday for the same reasons, I started taking Hrt on Saturday and feel so much better in myself as a person. I'm glad I had the op but just finding it hard not being able to do anything for a while. Good luck with what ever you decide to do.

I just had my hyster yesterday for suspected adeno. He thought I also had endo but he didn't find any. My uterus did was enlarged and "soft" (boggy?) and he expects the pathology report to show adeno.

I had been having very heavy bleeding but also bad cramps and ovulatory pain which seemed to be getting worse all the time.

I tried several natural and hormonal methods. My last try was Mirena IUD. It did help reduce my bleeding to a "normal" person's type of period, and it reduced my cramping. It takes 6-8 months to see if it works for you. I ended up having mine in for 1-1/2 years because I was having other health issues take precedent. However, once I felt better from my other issues, the side effects from the Mirena were driving me crazy and I had it removed. I hadn't realized that it had helped that much with the pain but the two cycles I had between IUD removal and the hyster were quite bad pain-wise and I had no energy the entire week. I also got my nasty clots back.

If you are unsure about surgery, you could try a Mirena. Maybe it could buy you some time? I wish mine had worked better but the side effects for me were constant spotting and draining. I had to wear protection all the time.

From what I have read, adeno is not a good match with ablation which was my other option, so I decided I didn't want to chance it. I just went with the hyster. By this point, I wanted to know the procedure would take care of the heavy bleeding and the period cramps (plus the bonus of birth control for me). Every time I did a pros/cons list, the hyst came out on top.

I am 41 and the average age of menopause is 51. I figured that I'd have at least 2.3 years of pain and bleeding at 12 weeks a year for more 10 years. I decided the surgical recovery time was worth it compared to chronic pain for the next 10 years.

Good luck with your decision.

I didn't know I had adeno until the path report came back. It explains a huge number of problems I had. I feel so much better now. The backache, leg aches, cramping, pain in general are gone. I also had a large number of adhesions and between the two I was in constant pain and had to pee all the time, probably due to the fibroids.

Since we didn't know about it, I have no idea if there are other treatments.

Thank you all for your advice/experiences. I have been researching and hounding all my friends who have had Hyst or are in the medical profession and I think I am going to have the Da Vinci hysterectomy. I only waver from my decision on my "good days", then I have knifing pain and I remember why I want this! I'll let you know how it goes. It's nice knowing I'm not alone in all this.

I understand the knifing pains and especially the peeing ALL of the time. I was up every 2 hours last night to go to the bathroom and that plays havoc on my rest time!! I have endo and adeno and fibroids too!! My uterus is enlarged to a 4 month pregnant size and it is due to one of the fibroids being the size of a grapefruit! I am scheduled for a full hysterectomy (abdominal incision) on next Tuesday March 6th. I have been lucky though not having a period since May of 2009 after an ablation because I almost bled to death. I also take 200mg of premetrium every night to keep me from bleeding and it works!! My cramps however are a different story!! They are all of the time. My legs hurt down the thighs! I am excited about the surgery but worried too!!