Possible Adenomyosis - options for treatment?

Hi - I am wondering if anyone has had success with either a progesterone IUD or endometrial ablation with possible adenomyosis. My history: periods became very heavy with painful cramping in mid 30's (I am now 43). Had a couple ultrasounds but was never diagnosed with anything other than an "enlarged uterus" from having 3 kids.

Then 2-3 years ago, developed longer periods with large clots passing as well as the heavy bleeding & more cramps, and also a crampy "pressure" type pain all throughout the month. One gyno recommended hysterectomy, but I was not in favor of that having just had surgery for something else. He said that I was not a candidate for endometrial ablation due to having a large uterus - and I should just have hysterectomy. He was pretty dismissive and I felt like he thought I was just being a whiner or something.

Went to new gyno (female) a few months later, who recommended trying BC pills. I never did well on BC pills when younger, due to side effects but did try them again for 6 mos. to see if they helped. BC helped with bleeding, but hated side effects & no sex drive. Decided to go see a midwife/menopause practitioner who prescribed bio-identical progesterone, which worked well for about a year - still heavy periods but seemed to help with PMS type symptoms and mood. Then about 9 mos. ago, started spotting in between periods, which has continued along with all the other lovely symptoms - clotting, flooding, pain, etc.

Just saw a new female ob/gyn who did another ultrasound and an endometrial biopsy to rule out cancer, etc - they called and said all was fine and I have a follow-up with her next week. Her diagnosis was probable adenomyosis during the first visit - but I wondered how that is actually diagnosed? She had said that I could try the progesterone IUD, which would help with the bleeding and possibly with pain. Also endometrial ablation was possible, and would take care of the bleeding but it could make the pain worse. Or else we could think about hysterectomy - keeping cervix and ovaries.

Surgery makes me nervous, since it cannot be undone and I have read so much about the possible complications. Husband is also very nervous as he is concerned about the impact of that on a sexual relationship. I am thinking of trying IUD first, and then going from there - but wondered if others had tried the IUD or ablation?? Since I don't tolerate BC pills well, does the IUD hormones cause problems as well?

Thanks so much for any help!
Sue

	Quote:
Originally Posted by smc0827 Hi - I am wondering if anyone has had success with either a progesterone IUD or endometrial ablation with possible adenomyosis. My history: periods became very heavy with painful cramping in mid 30's (I am now 43). Had a couple ultrasounds but was never diagnosed with anything other than an "enlarged uterus" from having 3 kids. Then 2-3 years ago, developed longer periods with large clots passing as well as the heavy bleeding & more cramps, and also a crampy "pressure" type pain all throughout the month. One gyno recommended hysterectomy, but I was not in favor of that having just had surgery for something else. He said that I was not a candidate for endometrial ablation due to having a large uterus - and I should just have hysterectomy. He was pretty dismissive and I felt like he thought I was just being a whiner or something. Went to new gyno (female) a few months later, who recommended trying BC pills. I never did well on BC pills when younger, due to side effects but did try them again for 6 mos. to see if they helped. BC helped with bleeding, but hated side effects & no sex drive. Decided to go see a midwife/menopause practitioner who prescribed bio-identical progesterone, which worked well for about a year - still heavy periods but seemed to help with PMS type symptoms and mood. Then about 9 mos. ago, started spotting in between periods, which has continued along with all the other lovely symptoms - clotting, flooding, pain, etc. Just saw a new female ob/gyn who did another ultrasound and an endometrial biopsy to rule out cancer, etc - they called and said all was fine and I have a follow-up with her next week. Her diagnosis was probable adenomyosis during the first visit - but I wondered how that is actually diagnosed? She had said that I could try the progesterone IUD, which would help with the bleeding and possibly with pain. Also endometrial ablation was possible, and would take care of the bleeding but it could make the pain worse. Or else we could think about hysterectomy - keeping cervix and ovaries. Surgery makes me nervous, since it cannot be undone and I have read so much about the possible complications. Husband is also very nervous as he is concerned about the impact of that on a sexual relationship. I am thinking of trying IUD first, and then going from there - but wondered if others had tried the IUD or ablation?? Since I don't tolerate BC pills well, does the IUD hormones cause problems as well? Thanks so much for any help! Sue

Sue--

I have learned alot about adeno, as I was suspected to have it as well. I have read that ablation is really not recommended for women w/ adeno. Here one article about it that might help. http://www.heavybleeding.com/adenomyosis.htm

I did have an ablation, but possibly developed adeno after. I am currently having success w/ prometrium. It is an oral bio identical natural progesterone. If you did not try an oral before, you might consider this as you can tell how much your body is really absorbing, rather than a cream. I wasn't clear from your post what you tried.

Keep us posted.

beachloversis

Sue,
Hi. I had an ablation in January of this year , and my Dr. said at the time that i probably had adenomyosis, along with the large cyst he found.
I knew immediately afterward that the ablation had not helped my pain, although it did help with bleeding. My opinion is that the ablation made my adenomyosis worse. I started having pain all the time.
I chose to go ahead with the hysterectomy and i am now 6 days post-op. I have a large hematoma(bruise) that is giving me some trouble, but otherwise i really can tell a big difference in how i feel already! There is alot of good information on this site and the internet. My advice to you is to research adenomyosis and find a good Dr. who listens to what you have to say.
Best Wishes,
Kim
TLH/BSO March 26, 2008

Hi,
Thanks for the info. The last Dr. I saw did say that many women have worse pain after ablation, so I didn't want to try that.

The progesterone I tried was a bio-identical capsule made at a compounding pharmacy, according to the nurse I saw- I am not sure of the brand or type? I started at 75 mg every day which helped some for a year, and then increased it to 100 mg when I started the spotting but I continued to spot between periods . A Dr. then told me to try to do 3 weeks on and then not to take it during the period week to see if that helped, but that didn't help either which is why I had the biopsy to rule out anything else. Is Protrieum a specific brand, do you know?

I am hesitant about the progesterone IUD since it is a synthetic hormone and I would imagine that if BC pills caused problems, then this also may. Also not sure if insurance will cover -will need to check on that. Thanks for all your help,
Sue

	Quote:
Originally Posted by smc0827 Hi, Thanks for the info. The last Dr. I saw did say that many women have worse pain after ablation, so I didn't want to try that. The progesterone I tried was a bio-identical capsule made at a compounding pharmacy, according to the nurse I saw- I am not sure of the brand or type? I started at 75 mg every day which helped some for a year, and then increased it to 100 mg when I started the spotting but I continued to spot between periods . A Dr. then told me to try to do 3 weeks on and then not to take it during the period week to see if that helped, but that didn't help either which is why I had the biopsy to rule out anything else. Is Protrieum a specific brand, do you know? I am hesitant about the progesterone IUD since it is a synthetic hormone and I would imagine that if BC pills caused problems, then this also may. Also not sure if insurance will cover -will need to check on that. Thanks for all your help, Sue

Yes, prometrium is a brand. It is bio identical natural capsule suspended in peanut oil. So if you have a peanut allergy it is a problem. My dr. also told me to take an alleve daily to help w/ the small spotting. Said it would help those few blood vessels constrict. (i haven't noticed a difference in that)

I have a thickened endometrium as well, and will probably end up w/ a biopsy or surgery after this month. How was the biopsy for you?

I, too, had an endometrial ablation in 04. It stopped the bleeding, but I still had some monthly cramping (light) until last summer. I was put on bc pills but it still became severe. By September, I KNEW I had to have a hysterectomy (although no one but me believed I had adeno until I met my surgeon). I did, and the only way to diagnose it is after the hysterectomy. I could tell by the night of my surgery that my pain had been cured!! Best thing I could have done for myself. Best of luck in your decisionmaking.

Biopsy was not really fun, but not terrible - cramping sort of like early labor during the procedure, but it only lasts 5-10 minutes and it helps if you breath slow during that. Then I felt kind of "crampy" all that evening. and had spotting for about 3-4 days...but I'm sort of used to cramps & spotting!!

I tried ablation - total failure. In fact, it didnt make a difference. I am scheduled for vaginal hysterectomy next month due to suspected adenomysosis

Wish I would have tried IUD first. Cant use IUD after ablation due to risk of uterine perforation.

Sue,

I am 40 years old with 2 kids and had a hyst. and a bladder sling a couple of weeks ago. My decision was based on a history of worsening stress incontinence, and while getting evaluated by an Obgyn. for that, I found out that my uterus and vagina were significantly prolapsing. That sealed the deal for me and I got the hysterectomy and had it done totally laparoscopially.

From what I've read, the only way to end the pain and other symptons from adenomyosis is to have the hyst.(they also told me after the surgery that I had a rather large uterus and adenomyosis). I also got an IUD last fall and my periods were barely noticable afterwards. Not sure which side effects worry you, but I am on medication for moderate depression, so I was really worried about that particular side effect of hormones. I checked with my Psych. before I got the IUD and she assured me that the Prog. only IUD would not affect my moods and it didn't. As long as insurance cooperates, doesn't hurt to give that a try first. I only had an IUD in for a few months before I had my surgery and they obviously can just take that out during the operation.

Hope this info. helps. I am recovering very well and highly recommend the laparoscopic avenue if you decide on the hyst. Here is a link to info. from the Mayo Clinic website about Adenomyosis: http://www.mayoclinic.com/health/Adenomyosis/DS00636
I highly recommend checking it out.

Good luck to you and let us know what you decide!

Hi Sue

	Quote:
am hesitant about the progesterone IUD since it is a synthetic hormone and I would imagine that if BC pills caused problems, then this also may,

Since the IUD delivers it's dose right to the uterus where it's needed rather than through your whole system, the side effects should be less than BC. My sister's neurologist won't let her use BCP, but he okay'd her for the Mirena IUD. She has done very well wtih it.

Here are some links that might be helpful to you:

Mirena freedom every month


Hysterectomy Recommended to you?

Directory of links for Alternatives / Options


Options Articles

Endometrial Ablation Discussion Group I agree that women with adenomyosis might not achieve pain relief from E.A., but since adeno is usually a 'suspected' or 'possible' diagnosis - some feel it's worth the try. My ablation was easy, and I don't regret it at all... but it did fail due to adenomyosis. The ridiculous bleeding was better, but the cramps were horrible, horrible.

Good luck with your decisions. Please keep us posted.


Beth