Adenomyosis and so confused

Hi, knowing what I know now, I wouldn't wait til your kids are older to get your hysterectomy, I'd do it now! I went through 6 years of increasingly horrid clotting, heavy flows, until it finally was so uncontrolled that my life totally revolved around my period, I could not take a full time job because of it either. I have two young kids and my doctor thankfully recommended LSH and the recovery is now wonderful - early pain and stuff in the first 5 days but now I'm feeling very, very good! Find a good one for this.....Hope all is well with you!

An add on from me, I had pretty bad anemia from all that bleeding and BC pills made my bleeding worse when doctor tried to put me on 365 days/year suppression - I just bled all the time instead of monthly.....Dr. suspected adenomyosis but could not confirm (they really can't he said) so I decided against ablation due to lack of guarantee of success and am so happy now that I did. Pathology shows adenomyosis - so ablation would have likely done nothing!

	Quote:
Originally Posted by Stacey063 Hi, knowing what I know now, I wouldn't wait til your kids are older to get your hysterectomy, I'd do it now! I went through 6 years of increasingly horrid clotting, heavy flows, until it finally was so uncontrolled that my life totally revolved around my period, I could not take a full time job because of it either. I have two young kids and my doctor thankfully recommended LSH and the recovery is now wonderful - early pain and stuff in the first 5 days but now I'm feeling very, very good! Find a good one for this.....Hope all is well with you!

Stacey is right. It really becomes a quality of life issue.

DAK- sounds like you may need a second opinion if you are feeling so confused. I had a doctor not even check the site with all of my symptoms and immediately say that they would schedule an ablation. They called to schedule it and I put it off due to the fact that I was moving and did not want to mess anything up once it was done. It sort of bothered me that they did not really check into it that well and just said- okay- you need an ablation.

Also- I am in a weight loss process and did not want to interrupt anything (exercise, etc.). Anyway, I have put it off for more than a year and decided to switch doctors this year.

They immediately found out it was severe adenomyosis! The doctor came to me, presented my options and said that bc would not work in my case, but they have to give it to you as an option. The tech that did my vaginal sonogram said I would make a great case for an ablation but wait for what the doc said.

Well, when he spoke with me, he brought up an ablation, but said this would not touch the adeno- he said that it has taken over my uterine muscle wall all the way. An ablation only burns 7 millimeters of your uterine lining. He said the only real solution is to just remove the uterus.

I notice there are so many doctors that are reluctant to take big steps. They perform other procedures and have to bring you back later for more. I am so thankful I ended up getting this second opinion! I am scheduled for my lavh in August!

I hope this helps you. I am 35.

Thank you all so very much for the great advice. It became obvious to me the last couple weeks when I cant take my kids to the park and play with them for very long bcause Im to tired and the pain is so bad.

Then today I had to go to the bathroom and I have my period and the pain while going was so bad I tried to be quiet but my kinds heard me moaning in pain and came to hold my hand....It has become a quality of life and taking over I to have had to quit my job so that is making money things worse which doesnt help either.

I just called my dr cause i needed a refill on my meds and asked for him to call me to discuss this I dont have an appointmnet with him til next friday. But I want to see if he will do this so we can get it scheduled hopefully by school so Im mostly (hopefully) healed by then. Ill let you all know what my dr says. Hes a wonderful doctor so I have faith!

	Quote:
Originally Posted by ksparkles DAK- sounds like you may need a second opinion if you are feeling so confused. I had a doctor not even check the site with all of my symptoms and immediately say that they would schedule an ablation. They called to schedule it and I put it off due to the fact that I was moving and did not want to mess anything up once it was done. It sort of bothered me that they did not really check into it that well and just said- okay- you need an ablation. Also- I am in a weight loss process and did not want to interrupt anything (exercise, etc.). Anyway, I have put it off for more than a year and decided to switch doctors this year. They immediately found out it was severe adenomyosis! The doctor came to me, presented my options and said that bc would not work in my case, but they have to give it to you as an option. The tech that did my vaginal sonogram said I would make a great case for an ablation but wait for what the doc said. Well, when he spoke with me, he brought up an ablation, but said this would not touch the adeno- he said that it has taken over my uterine muscle wall all the way. An ablation only burns 7 millimeters of your uterine lining. He said the only real solution is to just remove the uterus. I notice there are so many doctors that are reluctant to take big steps. They perform other procedures and have to bring you back later for more. I am so thankful I ended up getting this second opinion! I am scheduled for my lavh in August! I hope this helps you. I am 35.

I have been going to my gyno's office since I was a teenager, then moved away for a number of years. When I moved back to to town I went to my doctor to report the sorry state of my bleeding and gushing, they did a hystosonography (vaginal sonogram with saline injection) and said they didn't see anything that would promote need for surgery like a polyp or projecting fibroid. They also said you really can't definitively diagnose adenomyosis without actual pathology. My doctor recommended ablation immediately and since he is retiring soon and not doing surgeries anymore, he recommended that I talk to another surgeon in the office. When I met with that surgeon (who is now my doctor), he immediately said that after a review of my records that an ablation would likely not take care of me with my proven history of endo and prior abdominal surgeries, probable adeno. I had been on BC pills for several years to try to stem the heavy flow and clotting to no avail. He then changed me on BC pills for continuous supression - they immediately caused me to bleed even more so two months later, after giving it a good try with continuous pills, I asked to meet with new surgeon again. I told him pills not doing the job, so he brought up ablation again - I reminded him that he had said it probably wouldn't work for me and that I sure as heck didn't want multiple surgeries to take care of this. He then talked to me about going ahead with LSH, with the option for a TAH depending on what they found inside. What they found was a big mess! Prior to surgery he had expressed some reservations about LSH for me because of probable adhesions, but reviewed my last surgery report and it didn't mention too many. But boy, my remaining ovary was glued to my bowel, he freed it and said it was okay to remain, my bladder was adhered to uterus, they had to work almost 3 hours on me. He also told me I had endo again (had surgery for this over 20 years ago) and they took that out. All in all a big old success! And now, I am without urine or bleeding drainage for the first time I can ever remember! I am still early out but happy so far. Adeno was confirmed with the pathology call yesterday. Also, I had been leaking urine so long, I even didn't mention it to the dr. at the consult - but you know what.....it stopped after surgery! I am very happy - long, long story, but I was very hesitant to do any surgery after all the ones I went through before (endo, c-section) not having had the best experiences with those....but I'd do this again in a minute! Everyone has to decide for themselves, but this seems to be a big winner!

I was put on BC pills this month to try and stop the cramping and lessen the bleeding. Well, I ended up bleeding A LOT more (no cramps though) and clots the size of my fist. I bled non-stop with clots for 9 days. I had to go in this past Monday to get a progesterone shot to stop the bleeding (still spotting though...ick) and am now on Chormagen because I am now anemic.

I am scheduled for a July 17th hyster. I seriously want it done now. So, BCP did not work for me and made it a lot worse. My advice is to find a doc who will take your pain seriously and give you the hyster regardless of your age. It is not worth the pain and suffering and miserable life.

Big s
M

Stacey! What a story! I just read everyone's entries and see what we have all gone through! Glad to see all the celebrations!

Another thing I have not mentioned is that I do have serious blatter issues, but he says that I just have a very sensitive bladder and has given me a prescription for it. I am not taking the prescription because I feel like after surgery, everything will be fine. After reading all of these entries, I can see I am making the right decision. Plus- at this point, I am fine with my oversensitive bladder!

Advice??!!

My Gyn referred to one of his collegues, because he does Laproscopic and mine doesn't (just vaginal & abdominal). My gyn suggested that I have my cervix removed (due mostly to family history); however, the 2nd opinion (from the one that will be doing the surgery) I received suggested leaving my cervix. Although he did say it was completely up to me.

I, like the rest of you, have severe pain, including during intercourse. In your experiences, will that pain still exist during intercourse if I don't have my cervix removed, or have you been pain-free while retaining your cervix?

Thanks for any insight you can provide!

Thats a great question AK99, I was wondering that myself. My husband and I havent been able to have intercourse in months. And before that Ive had pain for so long I thought that was how it was supposed to be